Hello everyone! I got to go see Mike yesterday. He was coughing a bit but was in good spirits. My friend Pam and I made the trip right after church. Thanks for coming with me Pam!! Good sermon by the way Pastor Nauman! I can't believe I forgot to take Mike the Lemon Meringue Pie my sister Lynnette made for him.
For our CF friends here is a clip of Mike doing his IPV treatment. This is his therapy of choice while he is inpatient. Gotta run. Blessings to you!
Monday, February 28, 2011
Tuesday, February 22, 2011
7.5 Weeks!
That's how long it has been since Mike was in the hospital or on IVs. What a blessing. It has been a looooonnnnggg time since he was able to stay out that long. And now it was time to go back in.
I was very thankful to be able to get off of work and take him today. I met his new nurse practioner, Tiffany. Young woman and very nice. She listens to him. Mike did PFTs like always. On his third blow Joyce said, "Wow, Mike that one blew the other two out of the water!" I got excited. She said something about 50. Could his lungs really have gotten better? She asked him to do it again. His coughing negated that one and they had to throw it out. He did another one that she said was close to the 50. She had to leave and I waited for the printout. Mike said he felt bad and would be staying. I was actually thinking that maybe, for the first time ever, we would be packed to stay and get to go home. Then came the printout, FEV1 30%. Mike was happy it wasn't 25%. I was happy about that too but had a little glimmer of excitement thinking it could be better. We are content it isn't worse. We are thankful he continues to get better with these admissions.
All in all it was a positive admission. His weight is a little down but hanging in there. His blood pressure was excellent and his heart rate was good. His PFTs are better than he thought they would be. He did not need oxygen when we got there (still needs it at night). They accessed his port on the first try and it drew back blood (that is a huge blessing). And he got a room with a window to the outside world. Now, if Madison would just move a little closer to where we live so we could see him every day . . .
So many blessings in one day. Hope your day was full of blessings too! Peace to you.
I was very thankful to be able to get off of work and take him today. I met his new nurse practioner, Tiffany. Young woman and very nice. She listens to him. Mike did PFTs like always. On his third blow Joyce said, "Wow, Mike that one blew the other two out of the water!" I got excited. She said something about 50. Could his lungs really have gotten better? She asked him to do it again. His coughing negated that one and they had to throw it out. He did another one that she said was close to the 50. She had to leave and I waited for the printout. Mike said he felt bad and would be staying. I was actually thinking that maybe, for the first time ever, we would be packed to stay and get to go home. Then came the printout, FEV1 30%. Mike was happy it wasn't 25%. I was happy about that too but had a little glimmer of excitement thinking it could be better. We are content it isn't worse. We are thankful he continues to get better with these admissions.
All in all it was a positive admission. His weight is a little down but hanging in there. His blood pressure was excellent and his heart rate was good. His PFTs are better than he thought they would be. He did not need oxygen when we got there (still needs it at night). They accessed his port on the first try and it drew back blood (that is a huge blessing). And he got a room with a window to the outside world. Now, if Madison would just move a little closer to where we live so we could see him every day . . .
So many blessings in one day. Hope your day was full of blessings too! Peace to you.
Tuesday, January 25, 2011
CFville - Wasting Away Again
Here is the song Mike wrote while in the hospital in December as he was making the best of things with another 14-day stay. Words are written out below. Enjoy.
Gettin’ an x-ray, watchin’ the port placed,
All those nurses covered with masks
Strummin’ my six string, up in the east wing
Feel those drugs they’re beginning to kick in.
Refrain:
Fourteen days again in the hospital
Searchin’ for my lost pole of drugs
Some doctors claim that there’s a germ to blame,
But I know it’s all the germ’s fault.
CF’s the reason, I stayed here all season.
Nothing to show but this brand new red scar
Got a new Micky, it ain’t pretty
How it got here I haven’t a clue.
Refrain:
Woke up did vitals, neubs and inhalers
Waiting for the doctor to cruz on back in.
But there’s O2 for power, and a chair in the shower
With rails that will help me get up and hang on.
Enjoy
P.S. Sorry for the naughty language (wink) people were getting into it.
And for my Pipe Fab friends - yes, I am busy when I listen to this! ;)
Gettin’ an x-ray, watchin’ the port placed,
All those nurses covered with masks
Strummin’ my six string, up in the east wing
Feel those drugs they’re beginning to kick in.
Refrain:
Fourteen days again in the hospital
Searchin’ for my lost pole of drugs
Some doctors claim that there’s a germ to blame,
But I know it’s all the germ’s fault.
CF’s the reason, I stayed here all season.
Nothing to show but this brand new red scar
Got a new Micky, it ain’t pretty
How it got here I haven’t a clue.
Refrain:
Woke up did vitals, neubs and inhalers
Waiting for the doctor to cruz on back in.
But there’s O2 for power, and a chair in the shower
With rails that will help me get up and hang on.
Enjoy
P.S. Sorry for the naughty language (wink) people were getting into it.
And for my Pipe Fab friends - yes, I am busy when I listen to this! ;)
Saturday, December 25, 2010
Wednesday, December 22, 2010
He Leads by His Example
We were hoping for better news. Mike did PFTs today. FEV1 of 38%. It was a blow to think that 4 weeks on antibiotics out of the last 7 would only bring a 7% increase. Tough to swallow. Tough to think Mike went through all that isolation, pain, medicine . . . for 7%.
And I look at Mike and how he always focuses on the positive and my heart is lifted by his perseverance and strength. He is better - not worse. He will be home for Christmas. He is looking forward to seeing family. Of course he is disappointed that his numbers didn't get higher. And he continues to look up. He will be home tomorrow. He is not giving up. He even agreed to do a week of home IVs. This was a blow. He had hoped to be IV free for Christmas. He is thankful that, God willing, he will be IV free for New Year's and Missy's birthday. We are all thankful.
Here is a picture I couldn't upload the other day because my computer was acting up. Mike's little brothers frosting him cookies. Thanks for stopping by.
And here is a pic of the boys all dressed up for their Christmas Service at school. Richard insisted on the bow tie!
Blessings to you as we prepare our hearts for the coming of the Savior! Merry Christmas!!
Shalom!
Monday, December 20, 2010
Home for Christmas - a Gift
I haven't been a very good blogger. So sorry. I made a couple of entries on facebook and never made it over here. Mike is back in the hospital. He was admitted on December 9th just three weeks after being discharged the last time. Heart breaking. It felt like my heart was being ripped into tiny pieces. Mike was having trouble keeping up. His coughing was getting bad again. The kind where he turns purple and sounds like he is drowning in the phlegm. Then came the hymoptysis and the clinic advised him to come in packed and ready to stay. He wasn't going to be able to make it until Christmas without another hospitalization. The good news was if he went in on the 9th and all went well they felt he would be home (23rd) and IV free for Christmas.
His FEV1 was 31% and his weight was not as low as he usually gets. All good stuff. He started the same regimen of antibiotics as before, Vancomycyn, Tobra and Cipro. As of yesterday he was still coughing a lot. When I asked the nurse what was up she said that his cultures showed that he would probably be more susceptible to Cephepime. So they stopped the Tobra and started the Chephepime.
Mike has been having quite a bit of back pain due to sciatic nerve troubles. Our chiropractor took a look and did a treatment but then Mike got sicker and didn't go back. They have been giving him some muscle relaxers but that only helps until it wears off. These long hospital stays of sitting and lying in bed are raising havoc on his back. Today he got some physical therapy. They are giving him stretching exercises to help. The not so good news he got today is that they would like him to continue the Cephepime at home for another week once he is discharged. The good news is he still gets to be home for Christmas and he will not have to do the MRSA drug that runs 12 hours a day. Praise God.
It is tough to watch your child suffer - it doesn't matter what their age. What makes it bearable is witnessing Mike's amazing attitude. He continues to make the most of his situation. He doesn't focus on what he CAN'T do but immediately finds and focuses on what he CAN do. Watch this video clip to see what I mean.
His FEV1 was 31% and his weight was not as low as he usually gets. All good stuff. He started the same regimen of antibiotics as before, Vancomycyn, Tobra and Cipro. As of yesterday he was still coughing a lot. When I asked the nurse what was up she said that his cultures showed that he would probably be more susceptible to Cephepime. So they stopped the Tobra and started the Chephepime.
Mike has been having quite a bit of back pain due to sciatic nerve troubles. Our chiropractor took a look and did a treatment but then Mike got sicker and didn't go back. They have been giving him some muscle relaxers but that only helps until it wears off. These long hospital stays of sitting and lying in bed are raising havoc on his back. Today he got some physical therapy. They are giving him stretching exercises to help. The not so good news he got today is that they would like him to continue the Cephepime at home for another week once he is discharged. The good news is he still gets to be home for Christmas and he will not have to do the MRSA drug that runs 12 hours a day. Praise God.
It is tough to watch your child suffer - it doesn't matter what their age. What makes it bearable is witnessing Mike's amazing attitude. He continues to make the most of his situation. He doesn't focus on what he CAN'T do but immediately finds and focuses on what he CAN do. Watch this video clip to see what I mean.
Mike took Uncle Bob's guitar and continued to practice. He bought that little helicopter to have something fun to torment the doctors and nurses with. Several therapists and nurses have stopped by to give it a try. He continues to make the best of his isolation. My heart is pieced back together when I think of how blessed I am to have this young man in my life. Love, love, love you Mike. You are so brave and have an amazing attitude. I learn so much from your example!
***********************************
I have been very fortunate to be able to go see Mike almost every weekend he is in the hospital. With two other small children this is not an easy accomplishment but I have had so much help from so many wonderful people. Here is just a small sample of my recent blessings.
My boss Pete has driven me the almost two hour trip (one way) to Madison three separate weekends. Last weekend, with the threatening weather it didn't appear I would get to go. I was so disappointed. My heart was breaking. I wanted to go. At the last minute he convinced me we could do it and we went down and tried to beat the snow storm back. He white knuckled it and got me home safely. My heart was so full getting to visit Mike. The roads were ugly. Pete didn't make it all the way home and got stuck and had to walk the rest of his way home. He spent a good portion of the next day digging his car out. God bless you Pete!
My mom and dad brought food to put in my freezer. This helps me be able to take the time to go down to see Mike - when I know there is food in the freezer and I won't have to find time I don't have, to cook. My young boys have all the expectations of normal boys their age and grandma brought goodies and they are thrilled. God bless you Mom and Dad!
Lynnette did some Christmas shopping for my small godchildren. She also brought a pan of lasagna and some cookies and fudge. I am so grateful for her help. God bless you Lynnette!
Nicki gave up her Sunday to drive down to Madison with me and Pete. She and Pete went to the Mall and continued to knock out my Christmas gift list while I got to visit with Mike. Thank you Nicki. I so appreciate you giving me your time. I appreciate the chance to talk and not be judged. I so often just keep things in because I am afraid people will judge me or I will bumb them out. Nicki and Pete just let me talk and they listened. I really needed that. Thanks for putting up with my babble! God bless you Nicki!
Pam has brought food. She made Mike his favorite pie, lemon meringue and her hubby Ray made Mike the most amazing spaghetti. He loved every bite! Pam brought over a huge bowl of unfrosted cookies. Richie had a request to frost cookies this year. Pam made that possible. She made the dough and baked the cutouts so Richie and David got to decorate cookies for their brother who is in the hospital. My heart took a picture and I grabbed one with the camera too! They were so happy to be able to send something to their brother. God bless you Pam and Ray!
Grandma Kristi came over and watched the boys so I could go to Madison and visit Mike. Paul had a lot of work to do at school and he was able to get that done without having to leave the boys at home or pay for a babysitter. The boys had a blast playing games and eating pizza, donuts, and cookies. God bless you Kristi!
We are thankful grandma Nettie and grandpa Bob were not injured in their car accident this week. No matter what is going on in their lives they continue to help us by calling, sending goodies and just being wonderful people! God bless you both!
There have been numerous other people who have sent Mike and me cards and little gifts. People I have run into out shopping and have offered words of encouragement and prayers. The Pastors from our church who continue to make the trip to visit Mike. Thank you all for your words of encouragement, for your prayers, cards and support. We couldn't get through this alone. God bless each and every one of you! Blessings to you. Love, love, love. Peace! And THANK YOU! And the laughter - it is such wonderful medicine - thank you Pipe Fab for the laughter. Hugs to you.
Matthew 25:35 "For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me. . . Verse 40 "The king will reply, "I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me."
P.S. Mike just posted this on facebook:
i have CF and it sucks it hurts.
but i have an amazing family a wonderfull girlfriend and amazing friends
and ill b on home iv's for christmass
but ill b home
some things u just cant unrap
but that dosnt meen there not a gift
I heart this man. PFTs again on Wednesday. I will post his numbers when I get them. Blessings to you.
Thursday, November 25, 2010
Thankful
I know we aren't supposed to think about thankfulness just on Thanksgiving. But what better time to pause and capture those things we are thankful for on a daily basis. I am a scrapbooker and I love to record the ordinary, everyday stuff. Life is good. Memories are priceless.
I have a little book next to my computer where I have recorded things I am thankful for. Here are some of my thoughts from the little book:
I am thankful. . .
These are in no particular order and by no means encompass all of my blessings. They are just a few from the list of many - each entry has the date I wrote it and sometimes an explanation of why I wrote it. Fond memories. I am thankful I took the time to do this.
It is always a good time to remember all the blessings.
And speaking of blessings. I am so blessed by this little boy. The innocence and wonder of his little mind blesses me. Here he is with the Fleet Farm Toy Catalog. Kept him quiet for over 30 minutes!
I am so blessed!! I am blessed by each and everyone of you. Thank you for the cards and words of encouragement. I am in awe of those of you who reach out to us and help us during this trying time.
Happy Thanksgiving. Blessings to you.
I have a little book next to my computer where I have recorded things I am thankful for. Here are some of my thoughts from the little book:
I am thankful. . .
- for my sister
- that God blessed me with a daughter
- for the imagination of my children
- one-hour photos
- FREEDOM and for the people who will ensure that
- for my scrapbook hobby
- for movement
- that my hubby takes his role as spiritual leader in our family seriously
- for church and the Word
- for good surgeons and patient nurses
- for FAMILY and getting together
- for church fellowship
- for discipline, self-control, and the guidance of the Word
- that all my needs are met
- for Mike
- my husband and his kind and generous heart
- for Lynn's help
- for God's free GRACE
- to be able to give back
- that God protects our children even when we can't
These are in no particular order and by no means encompass all of my blessings. They are just a few from the list of many - each entry has the date I wrote it and sometimes an explanation of why I wrote it. Fond memories. I am thankful I took the time to do this.
Psalm 103:2 Praise the Lord, O my soul; and forget not all his benefits . . .
It is always a good time to remember all the blessings.
And speaking of blessings. I am so blessed by this little boy. The innocence and wonder of his little mind blesses me. Here he is with the Fleet Farm Toy Catalog. Kept him quiet for over 30 minutes!
I am so blessed!! I am blessed by each and everyone of you. Thank you for the cards and words of encouragement. I am in awe of those of you who reach out to us and help us during this trying time.
Happy Thanksgiving. Blessings to you.
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