Christians Should Read the Bible
5 months ago
Showing posts with label In The Hospital. Show all posts
Showing posts with label In The Hospital. Show all posts
Friday, September 25, 2009
Friday, September 4, 2009
Finding some roses along the thorny patch
Megan is resting again now. She had a good day overall. She made eye contact with us quite a few times when people were talking to her. There were only a few times that we thought she was having pain - mostly during the peaks of her fever.
We formally admitted her to the hospice service this morning. She had a new PICC line (more permanent IV) placed this morning so that we will not have to poke her to draw blood if needed or replace IV's gone bad. (Although she was upset with the process of the procedure and voiced her opinion on the fact that she was getting "messed with," everything went well.) This is good because they got it in before the three day weekend and I certainly did not want her to turn into a pin cushion again.
They are using the IV for more continuous control of her pain medication and the medication is also absorbed into her body instead of being digested and processed like the g-tube pain medications she has been taking at home. They usually took about 30-40 minutes to kick in once they were administered.
We are still making sure she gets all her medications and feedings as we were keeping for our schedule at home. While we expect her bodily condition to worsen, we do not know how long we will be here with her. We are taking advantage of the moments of alertness we have with her, comforting her when she is fussing, and doing our best to be positive in her presence.
"The Rose"
Some say love, it is a river
that drowns the tender reed.
Some say love, it is a razor
that leaves your soul to bleed.
Some say love, it is a hunger,
an endless aching need.
I say love, it is a flower,
and you its only seed.
It's the heart afraid of breaking
that never learns to dance.
It's the dream afraid of waking
that never takes the chance.
It's the one who won't be taken,
who cannot seem to give,
and the soul afraid of dyin'
that never learns to live.
When the night has been too lonely
and the road has been to long,
and you think that love is only
for the lucky and the strong,
just remember in the winter
far beneath the bitter snows
lies the seed that with the Son's love
in the spring becomes the rose.
We formally admitted her to the hospice service this morning. She had a new PICC line (more permanent IV) placed this morning so that we will not have to poke her to draw blood if needed or replace IV's gone bad. (Although she was upset with the process of the procedure and voiced her opinion on the fact that she was getting "messed with," everything went well.) This is good because they got it in before the three day weekend and I certainly did not want her to turn into a pin cushion again.
They are using the IV for more continuous control of her pain medication and the medication is also absorbed into her body instead of being digested and processed like the g-tube pain medications she has been taking at home. They usually took about 30-40 minutes to kick in once they were administered.
We are still making sure she gets all her medications and feedings as we were keeping for our schedule at home. While we expect her bodily condition to worsen, we do not know how long we will be here with her. We are taking advantage of the moments of alertness we have with her, comforting her when she is fussing, and doing our best to be positive in her presence.
Some say love, it is a river
that drowns the tender reed.
Some say love, it is a razor
that leaves your soul to bleed.
Some say love, it is a hunger,
an endless aching need.
I say love, it is a flower,
and you its only seed.
It's the heart afraid of breaking
that never learns to dance.
It's the dream afraid of waking
that never takes the chance.
It's the one who won't be taken,
who cannot seem to give,
and the soul afraid of dyin'
that never learns to live.
When the night has been too lonely
and the road has been to long,
and you think that love is only
for the lucky and the strong,
just remember in the winter
far beneath the bitter snows
lies the seed that with the Son's love
in the spring becomes the rose.
Wednesday, September 2, 2009
In His hands
I just wanted to let everyone know that Megan is in the hospital again. She was admitted last evening. She started having respiratory symptoms on Saturday afternoon and they have worsened since. We already had an appointment with the orthopedic doctor for this morning and instead of going to our hotel last night we brought her to the emergency room. They admitted her with signs of respiratory distress.
As of right now, she is stable respiratory wise. The orthopedic doctors have said they do not believe Megan's pain is coming from any dislocations or her scoliosis but mentioned that it may involve the nerves in her spine.
Ken and I have decided to investigate this possibility of finding a help for Megan's physical pain. One of three things will happen tomorrow when she has an MRI to determine anything about the pain she is enduring with her back and legs.
They have to place her under general anesthesia to do the MRI as she cannot lay still. They did this back in April on her chest cavity (they were looking specifically at her lungs and she came back improved because of the rest she needed). Tomorrow, we are expecting that she will either 1) Repeat the same experience as in April and we will learn about whether we can fix her pain and develop a plan accordingly. 2) She will not be able to be removed from the ventilator and we will need to make decisions about how and when to get her off of it later. Or, 3) The Lord will take her home and give her a perfect, pain free body.
We have thought long and hard about this decision. We have chosen this path because we do not want Megan to suffer and she has been struggling for the last few months, has not been getting better, and her pain has increased. We have placed Megan in the Lord's Hands. We know that He is able to take care of her and the rest of us no matter what happens tomorrow. He is the Great Healer and the Great Comforter.
He's got our little Megan in His Hands,
He's got our wondrous Megan in His Hands,
He's got our tiny little baby in His Hands,
He's got our family in His Hands.
As of right now, she is stable respiratory wise. The orthopedic doctors have said they do not believe Megan's pain is coming from any dislocations or her scoliosis but mentioned that it may involve the nerves in her spine.
Ken and I have decided to investigate this possibility of finding a help for Megan's physical pain. One of three things will happen tomorrow when she has an MRI to determine anything about the pain she is enduring with her back and legs.
They have to place her under general anesthesia to do the MRI as she cannot lay still. They did this back in April on her chest cavity (they were looking specifically at her lungs and she came back improved because of the rest she needed). Tomorrow, we are expecting that she will either 1) Repeat the same experience as in April and we will learn about whether we can fix her pain and develop a plan accordingly. 2) She will not be able to be removed from the ventilator and we will need to make decisions about how and when to get her off of it later. Or, 3) The Lord will take her home and give her a perfect, pain free body.
We have thought long and hard about this decision. We have chosen this path because we do not want Megan to suffer and she has been struggling for the last few months, has not been getting better, and her pain has increased. We have placed Megan in the Lord's Hands. We know that He is able to take care of her and the rest of us no matter what happens tomorrow. He is the Great Healer and the Great Comforter.
He's got our wondrous Megan in His Hands,
He's got our tiny little baby in His Hands,
He's got our family in His Hands.
Thursday, July 16, 2009
Friday it is! So Thankful!
I don't think I am going to jinx anything by announcing that the doctors are getting Megan's walking papers ready for tomorrow morning. She will be taking her full strength feeding schedule today and as long as everything goes well, we are "outta here." I am so thankful that:
1. Megan is laughing in her sleep as I type this update.
2. This hospital stay was relatively uneventful.
3. We were only here for a week.
4. We got to stay in our home town.
5. Megan has gotten through the whole week of being on IV fluids with the use of 2 peripheral IV's. And, both of them were placed on the first "poke." Now, that is a truly remarkable answer to prayer.
6. This Thankful Thursdays theme started by Lisa at Welcome to the Nut House. You can visit her blog and also view others who have linked their posts of thankfulness today.
Is there anything you are thankful for? Leave a comment - or - link with everyone else if you have a blog too.
1. Megan is laughing in her sleep as I type this update.
2. This hospital stay was relatively uneventful.
3. We were only here for a week.
4. We got to stay in our home town.
5. Megan has gotten through the whole week of being on IV fluids with the use of 2 peripheral IV's. And, both of them were placed on the first "poke." Now, that is a truly remarkable answer to prayer.
6. This Thankful Thursdays theme started by Lisa at Welcome to the Nut House. You can visit her blog and also view others who have linked their posts of thankfulness today.
Is there anything you are thankful for? Leave a comment - or - link with everyone else if you have a blog too.
Tuesday, July 14, 2009
Megan Update
It appears that Megan just has a case of the stomach flu. She was puking and is now in the #2 stage. I am glad that it appears that it is nothing more. However, she did need to be in the hospital because she has not been able to keep anything in her stomach. She needed the IV fluids to keep hydrated and from getting her electrolytes out of balance.
I just decided to throw a couple of pictures of Megan in this post because she is so beautiful. Her liver tests that were a little elevated have been lowering over the last few days. And, the doctors here called Dr. K in Indianapolis to make sure that they were on the right track with Megan's treatment plan.
If Megan starts tolerating her feedings tonight and tomorrow, we may be home before Friday. If she does not, then we may have to go to Indianapolis to discuss alternate feeding methods until we can feed her through her GJ-tube again. Right now, she looks really good, and I am anticipating coming home to resume our normal schedule - or at least as normal as possible.
I just decided to throw a couple of pictures of Megan in this post because she is so beautiful. Her liver tests that were a little elevated have been lowering over the last few days. And, the doctors here called Dr. K in Indianapolis to make sure that they were on the right track with Megan's treatment plan.
If Megan starts tolerating her feedings tonight and tomorrow, we may be home before Friday. If she does not, then we may have to go to Indianapolis to discuss alternate feeding methods until we can feed her through her GJ-tube again. Right now, she looks really good, and I am anticipating coming home to resume our normal schedule - or at least as normal as possible.
Saturday, July 11, 2009
Nothing monumental...
...to report yet. All of Megan's blood tests regarding her organ functions are OK. Her urinalysis was good. Her white blood cell count is double what it should be. I guess this means that she is fighting "something." We do not have her blood culture results to tell us if she has a bacteria growing there yet.
Megan still has no fever. Good. Her oxygenation levels have returned to normal. Good. The medication to stop her vomiting seems to be working. Good. She has not vomited any medications in her g-tube since 9pm last night. Good. She tolerated a small amount of pedialyte in her j-tube last night. Good.
They have started small amounts of her formula in her j-tube today. They are giving her about an ounce an hour and will increase it by an ounce every four hours as long as she keeps tolerating it. She is still taking the anti-vomiting medication. After she gets back up to her regular formula dosage, we will start weaning that to see if she is able to tolerate everything then.
In the meantime, we wait for the cultures to come back and see if that points to the reason why her white blood cell count is elevated. She looks good and is making eye contact and responsive to us. This is good because when she is really sick - she doesn't do that.
That's all for now. Thank you everyone for praying. Boy, do we need it.
Megan still has no fever. Good. Her oxygenation levels have returned to normal. Good. The medication to stop her vomiting seems to be working. Good. She has not vomited any medications in her g-tube since 9pm last night. Good. She tolerated a small amount of pedialyte in her j-tube last night. Good.
They have started small amounts of her formula in her j-tube today. They are giving her about an ounce an hour and will increase it by an ounce every four hours as long as she keeps tolerating it. She is still taking the anti-vomiting medication. After she gets back up to her regular formula dosage, we will start weaning that to see if she is able to tolerate everything then.
In the meantime, we wait for the cultures to come back and see if that points to the reason why her white blood cell count is elevated. She looks good and is making eye contact and responsive to us. This is good because when she is really sick - she doesn't do that.
That's all for now. Thank you everyone for praying. Boy, do we need it.
Friday, July 10, 2009
Would you believe...
...that Megan is in the hospital again? This has developed so quickly. She was fine until about 8:00pm last night. She started vomiting. That was the only symptom. No fever. She seemed to settle down about midnight and I put her to bed. When I woke to give her 4:00am medicine and catheterize her, she had still been vomiting. Only this time, it didn't look like her normal vomit. I cleaned her up and stayed up with her until this morning.
Megan was already scheduled to see her pediatrician this morning for her previous hospital discharge follow-up visit. So, Ken took her to her appointment. Megan was continuing to vomit for the doctor. The doctor did not like her vomiting, noticed that her weight was lessened again (even though they increased her feeding and she has been tolerating it well for the past two weeks), and decided that Megan needed to be admitted to the hospital.
The doctor ordered blood cultures, urine cultures, a MRSA swab test, complete metabolic panel, liver enzymes, kidney, pancreatic, and spleen functions, an emesis (vomit) test, and x-rays of her abdomen.
All we know right now is that Megan's vomit was positive for blood (We do not know from where at this point. That is why they are looking at all of the tests mentioned). They are giving her medication to try to help stop the vomiting and IV fluids because she is not able to tolerate anything through her g-tube. The good news at this point is that they were able to get a peripheral IV placed and the blood drawn in only one poke (since the PICC line IV was removed on Tuesday of this week). Pray that it stays functional for as long as we need it. We won't put another PICC line in unless the test results warrant the usage of an IV on a long term basis.
Now, we wait and see what we find out and develop a plan depending on the information we get. At best, she may have broken some capillaries in her GI tract from all the vomiting. At worst, they find that something isn't functioning at its best. They may need to do a scope of her GI and intestinal tract. If that is the case we will be going back to Indianapolis. The doctors at this hospital will not perform any surgeries or procedures on Megan. For the time being, we are still in South Bend. I will post more information as I learn of it.
Megan was already scheduled to see her pediatrician this morning for her previous hospital discharge follow-up visit. So, Ken took her to her appointment. Megan was continuing to vomit for the doctor. The doctor did not like her vomiting, noticed that her weight was lessened again (even though they increased her feeding and she has been tolerating it well for the past two weeks), and decided that Megan needed to be admitted to the hospital.
The doctor ordered blood cultures, urine cultures, a MRSA swab test, complete metabolic panel, liver enzymes, kidney, pancreatic, and spleen functions, an emesis (vomit) test, and x-rays of her abdomen.
All we know right now is that Megan's vomit was positive for blood (We do not know from where at this point. That is why they are looking at all of the tests mentioned). They are giving her medication to try to help stop the vomiting and IV fluids because she is not able to tolerate anything through her g-tube. The good news at this point is that they were able to get a peripheral IV placed and the blood drawn in only one poke (since the PICC line IV was removed on Tuesday of this week). Pray that it stays functional for as long as we need it. We won't put another PICC line in unless the test results warrant the usage of an IV on a long term basis.
Now, we wait and see what we find out and develop a plan depending on the information we get. At best, she may have broken some capillaries in her GI tract from all the vomiting. At worst, they find that something isn't functioning at its best. They may need to do a scope of her GI and intestinal tract. If that is the case we will be going back to Indianapolis. The doctors at this hospital will not perform any surgeries or procedures on Megan. For the time being, we are still in South Bend. I will post more information as I learn of it.
Thursday, June 18, 2009
YUCK!
The Infectious Disease (ID) team came to see me this morning. (I missed Dr. K because she rounded before I got to the hospital this morning -Whoops:) Anyway, ID said that the blood culture they took from the 16th (Tuesday) was growing bacteria again. It was Monday's culture that we were excited about yesterday. This means that we haven't killed this bug yet and that the "temporary style" line is probably infected as well. YUCK 1,000 TIMES OVER.
Now, they are recommending the removal of the "temporary style" central line. OK - but they cannot recommend placing the picc line yet as they fear it will be a target for the bacteria in her blood stream to attach to as soon as it is placed. YUCK 1 HUNDRED THOUSAND TIMES OVER!!!
And, we are left to rely on the tiny peripheral IV access (that we had trouble keeping in the past) to kill this bacterial bug with. We need three days worth of blood cultures with no bacterial growth before they will recommend placing a picc line to finish out the two more weeks of IV antibiotics she will need once we get the three initial days of no bacterial growth. Can I get a YUCK 1 MILLION TIMES OVER???
Here is the action needed by everyone who reads this post. Yes, that's YOU! Pray for the livelihood of this IV placed in the right forearm of my little daughter. It took three pokes to get this IV placed. The first two sites blew right away. This IV is positional and fragile to start with. If it could last 24 hours it would probably be a miracle. I need it to last 4 days. It is being used to administer antibiotics 7 times a day. 7 X 4 = 28 sessions of antibiotics.
Matthew 19:26 But Jesus beheld them, and said unto them, With men this is impossible; but with God all things are possible.
Now, they are recommending the removal of the "temporary style" central line. OK - but they cannot recommend placing the picc line yet as they fear it will be a target for the bacteria in her blood stream to attach to as soon as it is placed. YUCK 1 HUNDRED THOUSAND TIMES OVER!!!
And, we are left to rely on the tiny peripheral IV access (that we had trouble keeping in the past) to kill this bacterial bug with. We need three days worth of blood cultures with no bacterial growth before they will recommend placing a picc line to finish out the two more weeks of IV antibiotics she will need once we get the three initial days of no bacterial growth. Can I get a YUCK 1 MILLION TIMES OVER???
Here is the action needed by everyone who reads this post. Yes, that's YOU! Pray for the livelihood of this IV placed in the right forearm of my little daughter. It took three pokes to get this IV placed. The first two sites blew right away. This IV is positional and fragile to start with. If it could last 24 hours it would probably be a miracle. I need it to last 4 days. It is being used to administer antibiotics 7 times a day. 7 X 4 = 28 sessions of antibiotics.
Matthew 19:26 But Jesus beheld them, and said unto them, With men this is impossible; but with God all things are possible.
It's Picture Time!
Megan as she slept on Tuesday
Megan as she slept on Wednesday
Megan as she slept on Thursday
Monica visiting and cuddling on Wednesday afternoon
We played with the pennies in the stream...
And added a few of our own pennies and prayers
I love my girls so much.
And now, for the bonus "movie" of Megan almost laughing - but a great smile and wave nonetheless.
Megan as she slept on Wednesday
Megan as she slept on Thursday
Monica visiting and cuddling on Wednesday afternoon
We played with the pennies in the stream...
And added a few of our own pennies and prayers
I love my girls so much.
And now, for the bonus "movie" of Megan almost laughing - but a great smile and wave nonetheless.
Wednesday, June 17, 2009
Good News All Around!
The doctors have been taking daily samples of Megan's blood to determine bacterial growth for the last week. On Friday they took out her permanent central line and placed the temporary one. The cultures from Saturday and Sunday still showed bacterial growth even though we thought the source of the bacteria had been removed. They have continued on the same IV antibiotics daily since last week.
Just this morning we were told that the blood sample drawn on Monday was still clean - showing no signs of bacterial growth. Also, the results of the echocardiogram were normal and the chest x-ray was improved from the one they took when she was admitted last Tuesday. Hip, Hip, Hooray! Hip, Hip, Hooray! Hip, Hip, Hooray! (And, Praise God - For He's a Jolly Good Fellow! Which nobody can deny.)
As for me, I am slowly improving. I am trying to take Dr. K's advice and rest. I took a 3 hour nap in Megan's room this afternoon after my family went back home. I am taking my medicine as prescribed and will finish my regimen about the same time Megan finishes hers here as long as her health stays on the same path.
I have a full picture post coming tomorrow as well as the promised GJ-tube educational post. For now, I will leave you with this image:
I'll take half of a smile today - She is definitely feeling better. I am so thankful for that.
Just this morning we were told that the blood sample drawn on Monday was still clean - showing no signs of bacterial growth. Also, the results of the echocardiogram were normal and the chest x-ray was improved from the one they took when she was admitted last Tuesday. Hip, Hip, Hooray! Hip, Hip, Hooray! Hip, Hip, Hooray! (And, Praise God - For He's a Jolly Good Fellow! Which nobody can deny.)
As for me, I am slowly improving. I am trying to take Dr. K's advice and rest. I took a 3 hour nap in Megan's room this afternoon after my family went back home. I am taking my medicine as prescribed and will finish my regimen about the same time Megan finishes hers here as long as her health stays on the same path.
I have a full picture post coming tomorrow as well as the promised GJ-tube educational post. For now, I will leave you with this image:
I'll take half of a smile today - She is definitely feeling better. I am so thankful for that.
Tuesday, June 16, 2009
Dr.'s Rx = Rest and More Rest
Regarding Megan:
Friday evening Megan's tunneled central line was removed because of the bacterial infection it acquired. They placed a "temporary style" central line to give us access to administer the antibiotics that she will need for the 14 days after the daily blood cultures sampled return negative for further bacterial growth.
Our hope was that after the infected line was removed that subsequent blood cultures would no longer grow the bacteria because the infection appeared to be isolated to the central line catheter. The initial blood culture taken from a vein in her foot showed no bacterial growth.
Yesterday (Monday), we were told that the earliest we would be able to come home would be June 23 because that date is two weeks from when the infected line was removed. However, we found out this morning that new cultures taken over the weekend once again showed bacterial growth. These new samples were from the new "temporary style" central line they placed on Friday evening. Because of this, we will not be able to count the two weeks of antibiotics until future blood cultures stop showing bacterial growth.
As I mentioned in my post on Friday, the Infectious Disease doctors recommended placing a picc line instead of the "temporary style" central line. A central line was placed instead because Megan's surgery to remove the tunneled line was performed in an operating room during the evening hours. Picc lines are placed in flouroscopy (real-time x-ray) and the lab was already closed for the weekend. They decided it was better to go with the central line rather than try to use a smaller peripheral access because of the problems Megan has keeping them functional. It seems now though that since the new central line has also picked up this bacteria that we may go ahead and remove it also and place the picc line sometime this week.
The doctors are watching Megan's symptoms very closely and ordered an echocardiogram (ultrasound of her heart) and chest x-ray this evening to make sure the infection has not damaged her heart or lung function thus far. We do not have any evidence that this is the case. Megan looks good and has been resting peacefully. She even giggled a bit yesterday after they replaced her GJ tube (without any sedation) in flouroscopy.
Regarding Lori:
I found myself at the immediate care clinic yesterday because of complications with my bronchitis. After resting all weekend (I literally did not get out of bed), I was still short of breath, coughing, and very fatigued. I had a chest x-ray and found out that I do not have pneumonia. (Thank you, Lord!) I do, however, have a severe case of bronchitis. I was prescribed an antibiotic, some stronger cough syrup, as well as a rescue inhaler for my "coughing attacks."
Dr. K told me this morning that I need to get as much rest as I can while Megan is in the hospital so that I can get better for when Megan is ultimately discharged. Her exact words were "I already know you are a great parent. You don't have to prove anything to me by not leaving her (Megan's) side. This is going to be a long waiting game and you need to relax and get better." (Easier said than done, Dr. K.) However, I am trying my best. Tonight will be the fourth night in a row that I have not slept at Megan's bedside. It is not very easy for me to leave my baby, but the nurses have been good about calling me if they have a question or if Megan needs something.
My mom brought Monica for a visit last night (Monday) and will be going back home tomorrow (Wednesday) afternoon. While they were here, we learned how to SKYPE with my laptop. We spoke with my dad, Ken (who went home this afternoon to go back to work), my grandma, and our puppies. We were also able to show my dad and my grandma how Megan looked in her new pajamas in her hospital bed. It was really awesome to see and talk to them - the nurses were awed by our technology and thought it was really cool. We are so blessed that God has enabled us to utilize this service while we are away from home. I can still see the faces of my family members and feel comfort knowing that they are only just a simple "log-in" away.
Friday evening Megan's tunneled central line was removed because of the bacterial infection it acquired. They placed a "temporary style" central line to give us access to administer the antibiotics that she will need for the 14 days after the daily blood cultures sampled return negative for further bacterial growth.
Our hope was that after the infected line was removed that subsequent blood cultures would no longer grow the bacteria because the infection appeared to be isolated to the central line catheter. The initial blood culture taken from a vein in her foot showed no bacterial growth.
Yesterday (Monday), we were told that the earliest we would be able to come home would be June 23 because that date is two weeks from when the infected line was removed. However, we found out this morning that new cultures taken over the weekend once again showed bacterial growth. These new samples were from the new "temporary style" central line they placed on Friday evening. Because of this, we will not be able to count the two weeks of antibiotics until future blood cultures stop showing bacterial growth.
As I mentioned in my post on Friday, the Infectious Disease doctors recommended placing a picc line instead of the "temporary style" central line. A central line was placed instead because Megan's surgery to remove the tunneled line was performed in an operating room during the evening hours. Picc lines are placed in flouroscopy (real-time x-ray) and the lab was already closed for the weekend. They decided it was better to go with the central line rather than try to use a smaller peripheral access because of the problems Megan has keeping them functional. It seems now though that since the new central line has also picked up this bacteria that we may go ahead and remove it also and place the picc line sometime this week.
The doctors are watching Megan's symptoms very closely and ordered an echocardiogram (ultrasound of her heart) and chest x-ray this evening to make sure the infection has not damaged her heart or lung function thus far. We do not have any evidence that this is the case. Megan looks good and has been resting peacefully. She even giggled a bit yesterday after they replaced her GJ tube (without any sedation) in flouroscopy.
Regarding Lori:
I found myself at the immediate care clinic yesterday because of complications with my bronchitis. After resting all weekend (I literally did not get out of bed), I was still short of breath, coughing, and very fatigued. I had a chest x-ray and found out that I do not have pneumonia. (Thank you, Lord!) I do, however, have a severe case of bronchitis. I was prescribed an antibiotic, some stronger cough syrup, as well as a rescue inhaler for my "coughing attacks."
Dr. K told me this morning that I need to get as much rest as I can while Megan is in the hospital so that I can get better for when Megan is ultimately discharged. Her exact words were "I already know you are a great parent. You don't have to prove anything to me by not leaving her (Megan's) side. This is going to be a long waiting game and you need to relax and get better." (Easier said than done, Dr. K.) However, I am trying my best. Tonight will be the fourth night in a row that I have not slept at Megan's bedside. It is not very easy for me to leave my baby, but the nurses have been good about calling me if they have a question or if Megan needs something.
My mom brought Monica for a visit last night (Monday) and will be going back home tomorrow (Wednesday) afternoon. While they were here, we learned how to SKYPE with my laptop. We spoke with my dad, Ken (who went home this afternoon to go back to work), my grandma, and our puppies. We were also able to show my dad and my grandma how Megan looked in her new pajamas in her hospital bed. It was really awesome to see and talk to them - the nurses were awed by our technology and thought it was really cool. We are so blessed that God has enabled us to utilize this service while we are away from home. I can still see the faces of my family members and feel comfort knowing that they are only just a simple "log-in" away.
Sunday, June 14, 2009
A Day of Rest
I have been tired for a long time. I don't remember the last time I had a complete night's rest, or even a really good nap for that matter. I always sleep with one eye open, so to speak, because I always know that I am going to be needed by someone at some point during the night. Sometimes Monica gets up in the middle of the night and comes to me. Sometimes Ken isn't sleeping well and says, "Honey, are you awake?" But, most of the time I am up in the middle of the night because I am helping Megan by making sure she gets suctioned (if needed), medications administered, in and out catheterized as of late, and changing diapers.
Yesterday, Ken and I received a call from the Ronald McDonald House (RMH) saying they had a room for us to use. We went over and "moved in," washed a load of laundry, and rested for a bit - Ken wanted to "facebook" (the hospital's WIFI has it blocked) and I just sat in the chair with my feet up and then made the bed with the clean sheets we were given when we checked in. We made plans at that time that we would both come back in the evening and rest together so that we would be ready to face another day at the hospital since we had been sleeping at Megan's bedside for most of the week. At best, you get interrupted sleep at a hospital bedside.
When the new nurse came in at 7:30pm to be introduced, he was a MAN. Megan has never had a male nurse in the hospital before. I freaked to myself and after the nurse left the room I said to Ken, "Would you mind staying here tonight to make sure that our daughter is protected tonight - since she needs diapered and cathed and all." He said yes before I finished the question. It isn't that I don't trust other people. My daughter is just one of the most important people in my life and my protective motherly instinct got the better of me. It is better to be safe than sorry, right?
Anyway, soon after that, I told Ken I was tired and wanted to walk the 3 blocks to the RMH while it was still light outside. He said OK and that he and Megan would be fine. I got to the RMH about 8:00pm, used the restroom, took my medicine (I have been battling a cold, bronchitis, and never-ending coughing fits for about a month now. I have just been taking my medicine and going about my daily activities like there was nothing wrong.), and went directly to bed.
I slept, and slept, and slept, and slept. I woke around 8am and 9am when our parents called for an update about how Megan was doing - which I sounded totally asleep for and sent them to call Ken's phone. Then, I took my morning medicine and laid back down so that I could hopefully avoid the full-blown "coughing attacks" that I have been having as of late when it is medicine time. I fell back to sleep and slept, and slept, and slept some more.
I woke up about 1:30pm and called Ken to see how he and Megan were doing. He said they were doing fine and to rest as long as I needed. I went downstairs to the pantry and found some crackers and a granola bar and got something to drink and went back to bed.
Then, I remembered that today is Sunday. I began to think about Sunday being set aside in the Old Testament as a day of rest. So, I got my computer out and started looking for references in the Bible for information about how I could use my experience for His good. I found out that resting on the sabbath has a few important meanings. First, God rested on the seventh day after He finished His creation. Secondly, resting on the sabbath was a gift to the Israelites when they were freed from their slavery in Egypt. Thirdly, He sent his Son to die on the cross for us so that we can rest in Him here on earth as a recipient of that gift. And, lastly, that we may have Eternal Rest when our soul is separated from our body on this earth.
Although my earthly body still feels heavy laying in bed as I type this post, I am resting in His promise that He is with me every step of the way and my work is temporary. One day I will rest eternally with Him and my body won't have to try to "catch up" from all of the work it has been doing to care for my family members this spring.
I have found this night and day to be an extreme gift because I have yearned for a night of sleep like this for so long. I don't feel rushed right now to get to my next activity because I know that the rest of my family members are in good hands. It is now time for my afternoon medicine again. I think I am going to take it and go back to bed, so to speak, because, you know, I never got out of bed yet today.
Yesterday, Ken and I received a call from the Ronald McDonald House (RMH) saying they had a room for us to use. We went over and "moved in," washed a load of laundry, and rested for a bit - Ken wanted to "facebook" (the hospital's WIFI has it blocked) and I just sat in the chair with my feet up and then made the bed with the clean sheets we were given when we checked in. We made plans at that time that we would both come back in the evening and rest together so that we would be ready to face another day at the hospital since we had been sleeping at Megan's bedside for most of the week. At best, you get interrupted sleep at a hospital bedside.
When the new nurse came in at 7:30pm to be introduced, he was a MAN. Megan has never had a male nurse in the hospital before. I freaked to myself and after the nurse left the room I said to Ken, "Would you mind staying here tonight to make sure that our daughter is protected tonight - since she needs diapered and cathed and all." He said yes before I finished the question. It isn't that I don't trust other people. My daughter is just one of the most important people in my life and my protective motherly instinct got the better of me. It is better to be safe than sorry, right?
Anyway, soon after that, I told Ken I was tired and wanted to walk the 3 blocks to the RMH while it was still light outside. He said OK and that he and Megan would be fine. I got to the RMH about 8:00pm, used the restroom, took my medicine (I have been battling a cold, bronchitis, and never-ending coughing fits for about a month now. I have just been taking my medicine and going about my daily activities like there was nothing wrong.), and went directly to bed.
I slept, and slept, and slept, and slept. I woke around 8am and 9am when our parents called for an update about how Megan was doing - which I sounded totally asleep for and sent them to call Ken's phone. Then, I took my morning medicine and laid back down so that I could hopefully avoid the full-blown "coughing attacks" that I have been having as of late when it is medicine time. I fell back to sleep and slept, and slept, and slept some more.
I woke up about 1:30pm and called Ken to see how he and Megan were doing. He said they were doing fine and to rest as long as I needed. I went downstairs to the pantry and found some crackers and a granola bar and got something to drink and went back to bed.
Then, I remembered that today is Sunday. I began to think about Sunday being set aside in the Old Testament as a day of rest. So, I got my computer out and started looking for references in the Bible for information about how I could use my experience for His good. I found out that resting on the sabbath has a few important meanings. First, God rested on the seventh day after He finished His creation. Secondly, resting on the sabbath was a gift to the Israelites when they were freed from their slavery in Egypt. Thirdly, He sent his Son to die on the cross for us so that we can rest in Him here on earth as a recipient of that gift. And, lastly, that we may have Eternal Rest when our soul is separated from our body on this earth.
Although my earthly body still feels heavy laying in bed as I type this post, I am resting in His promise that He is with me every step of the way and my work is temporary. One day I will rest eternally with Him and my body won't have to try to "catch up" from all of the work it has been doing to care for my family members this spring.
I have found this night and day to be an extreme gift because I have yearned for a night of sleep like this for so long. I don't feel rushed right now to get to my next activity because I know that the rest of my family members are in good hands. It is now time for my afternoon medicine again. I think I am going to take it and go back to bed, so to speak, because, you know, I never got out of bed yet today.
Saturday, June 13, 2009
Want to be "In The Know"?
Original Post as it appeared on Saturday, June 13, 2009:
I am working on a special educational/tutorial post with pictures today explaining everything I "tweeted" just now. Click on the "follow me on twitter" at the bottom of my left side bar and start reading from the bottom of the page and up for the whole story and today's update on how Megan is doing. (No, it won't be graphic or gross. I promise.)
Updated Post as of Saturday, June 20, 2009.
Here are the tweets that I posted on Saturday morning regarding Megan's unfolding drama on Friday night, just before she had her tunneled central line replaced with the "temporary style" central line. They are listed here in the order I "tweeted" them in.
Now that you have taken the crash course All About G-tubes and All About GJ-tubes, you are ready to fully understand what happened last Friday (June 12, 2009) night just as the transport lady showed up to take Megan to surgery. I went to pick her up to place her on the transport cot and felt - Tweet #5.
This is what I found: An extension with a Gastric port attached to it - not attached to the GJ-tube itself.
I am working on a special educational/tutorial post with pictures today explaining everything I "tweeted" just now. Click on the "follow me on twitter" at the bottom of my left side bar and start reading from the bottom of the page and up for the whole story and today's update on how Megan is doing. (No, it won't be graphic or gross. I promise.)
Updated Post as of Saturday, June 20, 2009.
Here are the tweets that I posted on Saturday morning regarding Megan's unfolding drama on Friday night, just before she had her tunneled central line replaced with the "temporary style" central line. They are listed here in the order I "tweeted" them in.
- Megan is out of surgery now. We are just waiting for her to wake up so we can go into the recovery room and see her.
- Megan came out of her central line surgery like a trooper. She has a new line which we are using for fluids and antibiotics. The bad news?
- Just as they came to take her to surgery, the failed yet still fragile and functional GJ tube bit the dust. We started getting ready to...
- ...transfer her to the bed to go to surgery and found this brown liquid all over her bed. Guess what it was? Drumroll please....
- Her stomach contents. The face of the gastric port on her GJ tube totally came off. You should have seen the look on the nurse's face...
- I said, "Got a new G-tube we can put in until we can get the GJ replaced.?" She said, "I don't know what to get." I said, "Don't you have...
- "...a catheter with a balloon we can throw in to plug her stomach from falling all over the bed? I can change it. Is that what's wrong?"
- You should have seen the relief in her face when I said that. She said, "I'll be right back." and came in with an actual G-tube.
- I said, "Yeah, that'll work. I took the GJ out - she put the new G in (with a little mess) and Megan was whisked off to surgery.
- The really bad news? It happened on a Friday evening at 6:45pm. The GJ tube won't be put back in until Monday when Interventional radiology
- is back "in the office." This means Megan will have to get her nutrition intravenously. Her food went into the J port which goes into
- ...her intestines. But, we can still give her medications. They went into the G port, which is her stomach. And, that is what we put in.
- Why did I tweet all that? I could have just put it in a short blog post? I am making a pictoral blog of what happened so you can understand.
- It may take me most of the day to finish. Getting all the photos ready and everything.
Now that you have taken the crash course All About G-tubes and All About GJ-tubes, you are ready to fully understand what happened last Friday (June 12, 2009) night just as the transport lady showed up to take Megan to surgery. I went to pick her up to place her on the transport cot and felt - Tweet #5.
This is what I found: An extension with a Gastric port attached to it - not attached to the GJ-tube itself.
Remember, the GJ tube is supposed to look like this.
When I took the Gastric port off of the extension, the GJ tube looked like this.
Then, just for the fun of it - I decided to show you what a GJ tube looks like after it has been in Megan's belly for about 6 months.
See how the balloon is no longer symmetrical? And the color of the tube after it has been washed in gastric juices? The tube part of it wasn't going to last much longer either.
Just for kicks, this is how long her GJ-tube looks. The sizes vary depending on the age and size of the person wearing the tube. Megan's is 32 centimeters long.
Just for kicks, this is how long her GJ-tube looks. The sizes vary depending on the age and size of the person wearing the tube. Megan's is 32 centimeters long.
I'm sorry. Some of these pictures are a little gross. But, that's the worst it gets.
Now, You are "in the know."
The pictures are a little dark - sorry. I took them inside, with my cell phone, and no flash. By the way - This is the actual tube we put in that night. And, this is a picture of Megan's belly.
And, as I said in the "All About GJ-tubes" post, we waited until Monday at 3pm for her appointment for her button to be replaced in flouroscopy. The pictures of the button with the extensions attached are of her new tube placed on Monday. We were able to administer her medications over the weekend, but she had to receive IV fluids until Monday afternoon to supplement her feedings and keep her hydrated. Luckily, she still had her "temporary-style" central line in place. I can only imagine how many peripheral IV's she would have gone through on that much fluid for three days.
Friday, June 12, 2009
More Harm Than Good?
A Tiny History Lesson - April 2009 (101)
Fast Forward to Today
Megan's Current Status
Megan's central line was placed back in April when it was suspected that Megan had Neuroleptic Malignant Syndrome - a side effect of two medications she was taking - and, finally, a confirmed case of para influenza mixed with it. She went through 8 IV's throughout the course of a one week period and over 20 tries to insert new ones. She had bruises all over her body. The last few people who tried to put them in said, "There are no good spots, but I think I can try here."
Those statements were made not only by the nurses on our unit, but by emergency room nurses, and anesthesiology residents. The problem wasn't really that they weren't reaching the veins, but that her veins blew as soon as they went to flush the newly placed IVs. I finally told them that they were done poking her and that it was torturous to put her through so many "sticks" and convinced them that she needed a more permanent type of access.
The last peripheral IV placed just prior to her central line was done in day surgery. Dr. K decided to place this tunneled central line so that Megan could use it at home for comfort measures because she was most likely going to need hospice care, if she made it home at all.
As we all know, Someone touched Megan's body and she recovered enough to go home and try to make a "new normal" for our lives. We did not end up calling the hospice service yet because it appeared that we might be able to find that "normal." The central line was our precautionary "Safety Net." It is not that we didn't trust God to take care of her, we just know what her ultimate prognosis is and things have been very rocky this spring. The doctors did not expect us to take her home at the end of April. Dr. K "had no idea" why her status changed so drastically in such a short period of time.
Fast Forward to Today
We spoke with the Infectious Disease (ID) team just moments ago. They are saying that the central line needs to be removed. Megan has a very weakened immune system and these bugs are finding the line and growing - causing havoc in her system. She still needs ten days of IV Vancomycin and Gentomycin after it is removed later today. The ID doctors are going to recommend placing a pic line to administer the antibiotics. It is uncertain whether or not we will be finishing the antibiotics in the hospital or at home and then take the line out immediately upon finishing them. It seems that Megan's system is not able to tolerate having the line if it is not being used daily for the IV pain medications we were expecting, but not needing, up to this point.
We have already spoken with a resident from the surgical team and signed consent to take the tunneled central line out and place a new "temporary style" central line. They have also ordered her to be NPO so that they can do the surgery today.
Megan's Current Status
Megan finally went to sleep about 1:00am this morning after fevering and being agitated most of the day yesterday. They gave her all the extra drugs she can have last night, and she finally fell asleep a couple hours later. She is currently still asleep and fever free. The diahhrea has already started from the antibiotics and they have added IV fluids to fix her electrolyte imbalance.
Please pray that the surgery will go as planned, Megan will have no trouble with the anesthesia, and we will be home as soon as possible to resume our new home routine. We did have a 12 day period where Megan seemed fairly stable on this routine. We were going to take her to church last Sunday but on Friday she started having symptoms from this new infection. Hopefully, when we are done with these antibiotics, we can get back to the way she was in that 12 day stretch and maintain it.
Wednesday, June 10, 2009
Newest Developments
I just spoke with Ken on the phone and Dr. K has been in to see Megan. Here is what we have learned so far:
- Megan already has a bacteria growing in the blood cultures they drew last night and they are starting her on amoxicillin and vancomycin (IV) until they find more out about what type of bacteria it is. Her other labs and cultures are not all back yet.
- Her chest x-ray looks OK right now, even though she has a lot of mucus production and struggles to clear it. She needs a lot of suctioning.
- Dr. K is going to make sure that Megan is very comfortable. She does not want her to moan or cry. She told the residents that she would rather have Megan sleeping than awake and uncomfortable.
- Megan will not be released until she is fever free for 24-48 hours and her secretions are under control. As many of you know that we have not been able to achieve this for any length of time since the beginning of April.
- Dr. K is more concerned about this infection, the fever, and Megan's comfort level than changing out her GJ tube or doing the sleep study right now. When all this is cleared, we will address those issues.
I am going to Indianapolis to be with Megan and Ken today. I have no idea how long we will be there. We are on the waiting list for a room at the Ronald McDonald House. Monica will probably join us when we get a room there. I am going to take a camping cot and stay in Megan's room with Ken. Ken has re-instated his family leave from work. I will continue to post updates about our trip as I am able.
Tuesday, June 9, 2009
Newer Developments
Megan is on her way to Indianapolis. The radiologist ran into some complications last week in sedating an adult patient with Mitochonndrial disease and has refused to place Megan's tube with sedation. The Dr. In Indy said "We love Megan and will take her." Before our pediatrician even told her what the problem was. They are also going to address the other issues listed in the previous post. Ken and Megan will be in the ambulance in about half an hour from now. I am a nervous wreck sitting here at the flea market. I can't get my van out until 5pm because it is parked on my rented space and there are hundreds of people in the aisles.
New Developments
Megan's G-J tube failed this morning when Ken went to give her medicine. Since she had a Dr.'s appointment alreaady, we figured we could just add that to our list of things to do today (She was scheduled yesterday because of issues resulting from her infections this week.). Because Megan has been having the spastic movements, she will need sedation to have the procedure to place a new GJ tube. This is because the "J" part of the feeding tube is threaded through her small intestines to bypass the stomach. The extraneous movements could cause the instrumentation needed to perforate her small bowel.
So, Megan is being admitted to the hospital for this procedure - it is also the safest place for them to protect her airway during sedation. They will also be consulting a pulmonologist regarding her secretions, her ability to cough enough to be suctioned, and keep her airway cleared to breathe properly. She may also have a sleep study. She is still being treated in South Bend right now. But we will be in close consultation with her Dr.'s in Indianapolis.
Please pray that things will go smoothly, Megan will be protected, and we will know what to do to help her as best we can.
So, Megan is being admitted to the hospital for this procedure - it is also the safest place for them to protect her airway during sedation. They will also be consulting a pulmonologist regarding her secretions, her ability to cough enough to be suctioned, and keep her airway cleared to breathe properly. She may also have a sleep study. She is still being treated in South Bend right now. But we will be in close consultation with her Dr.'s in Indianapolis.
Please pray that things will go smoothly, Megan will be protected, and we will know what to do to help her as best we can.
Wednesday, May 13, 2009
Heartburn, Nausea, Indigestion, Upset Stomach...
This is our life today. We are having issues controlling secretions, tolerating feeds, and managing medication levels. The Dr. says that we will be able to bring Megan home when her blood cultures are negative for bacterial growth. We are uncertain whether or not the fevers are going to go away. The blood cultures taken yesterday have yet to show growth, but Megan is still having fevers daily. The doctors are beginning to think that her body is not able to successfully regulate her temperature right now. We do not know if this is permanent or will improve over time.
I want to believe so badly that Megan can maintain a level of health that will enable us to live a comfortable "status quo" life again. Questions have been raised today that make this dream seem like its worlds away. We have known for six years that Megan's ultimate diagnosis is for her body to fail and that she will live with our Heavenly Father until we are able to reunite. I feel honored to be Megan's mother and would like to have her as a part of our family for as long as possible without being broken and in pain.
Emotionally, yesterday was an up kind of day and today feels down. I want to scream "Calgon, take me away!" but may have to settle for a fresh bottle of the pink stuff.
I want to believe so badly that Megan can maintain a level of health that will enable us to live a comfortable "status quo" life again. Questions have been raised today that make this dream seem like its worlds away. We have known for six years that Megan's ultimate diagnosis is for her body to fail and that she will live with our Heavenly Father until we are able to reunite. I feel honored to be Megan's mother and would like to have her as a part of our family for as long as possible without being broken and in pain.
Emotionally, yesterday was an up kind of day and today feels down. I want to scream "Calgon, take me away!" but may have to settle for a fresh bottle of the pink stuff.
Tuesday, May 12, 2009
The Plan: Short and Sweet
The Infectious Disease Dr. just left our room with this plan in place:
- Treat her UTI, ear infection, and central line bacteria with a 14 day course of Vancomycin. This should cover all the bacteria included with these infections.
- Monitor her fevers and discomfort.
- Culture blood samples from her central line until they come back showing no bacterial growth.
- If #2 & #3 happen before the 14 course of treatment is over and she is tolerating her feeding and home medication schedule, we will be able to go home and administer the rest of the IV antibiotics on our own.
Yes, you heard me right! There was no mention of surgery to remove the IV access and limp along again to get the rest of the antibiotics on board. My daughter's pin cushion status may be spared. Thank you for praying even before I told you what to pray for. Is typing my prayer wish the same as asking God for what I want? No matter - He answered anyway. As soon as I hit the "publish" button, the ID team was gowning up to enter our room with this marvelous plan. {Gown? you ask. Yes, one of the bacteria found in her urine only - not bloodstream was MRSA :( On the bright side, Meg will get a private room every time she goes to the hospital now and in the future :)}
So, if all these conditions are met soon, we will be on our way home again. Pray that this plan will go down without a hitch. I think this hospital is a wonderful place, but it is not my home and I don't want to be here if I don't have to be. Although, it does pay to be nice to the staff here and make friends. Look what the housekeeper brought me today -
It beats this hands down - all day long everyday!
Just Me and Meg
This picture of Megan and I was taken back in April. Do we look alike?
Anyway,
Megan and I had a good trip to Indianapolis yesterday. We got settled into our room, the Dr.'s scheduled all her medicine as according to the schedule we had been keeping, they drew some labs, and we started preparing for the time we are going to spend here on the IV antibiotics. There is a question as to whether or not they will need to take out the central line or just treat her and the central line with the antibiotics until her blood cultures come back clean again. Either way, she needs IV access to complete the antibiotic treatment. If they have to remove the central line(which requires surgery), they still need to have some other access for the antibiotics. The way I understand it, they will not be able to put the same kind of line back in and definitely not in the same spot. The reason they placed the line in the first place is because every inch of her body was black and blue and she felt like a total pin cushion they had so much trouble keeping IV access and ran out of places to put them. Secretly, I am hoping they will be able to treat this line without removing it so that she can stay out of the operating room. This might mean a longer course of antibiotics though.
I am currently waiting on the Infectious Disease (ID) Dr. to come and discuss our best plan of attack on this superbug. I have plenty of questions lined up for this Dr., especially since they are taking so long to come see us. The longer they take, the more questions I can ponder. I'm ready for you ID!
Please pray that they come soon and we can get a plan mapped out that will help Megan improve and get us back to the rest of our family. (Ken, Monica, Kisses (our dog), and our 3 year old goldfish that the Lord fed for us during our 3 week hospital stay last month).
Anyway,
Megan and I had a good trip to Indianapolis yesterday. We got settled into our room, the Dr.'s scheduled all her medicine as according to the schedule we had been keeping, they drew some labs, and we started preparing for the time we are going to spend here on the IV antibiotics. There is a question as to whether or not they will need to take out the central line or just treat her and the central line with the antibiotics until her blood cultures come back clean again. Either way, she needs IV access to complete the antibiotic treatment. If they have to remove the central line(which requires surgery), they still need to have some other access for the antibiotics. The way I understand it, they will not be able to put the same kind of line back in and definitely not in the same spot. The reason they placed the line in the first place is because I am currently waiting on the Infectious Disease (ID) Dr. to come and discuss our best plan of attack on this superbug. I have plenty of questions lined up for this Dr., especially since they are taking so long to come see us. The longer they take, the more questions I can ponder. I'm ready for you ID!
Please pray that they come soon and we can get a plan mapped out that will help Megan improve and get us back to the rest of our family. (Ken, Monica, Kisses (our dog), and our 3 year old goldfish that the Lord fed for us during our 3 week hospital stay last month).
Twitter updates: For anyone wanting updates about Megan and I between blog postings, you can click the "follow me on twitter" link on the right sidebar. It has the last three updates listed already. The link will take you to a page that lists every short update I make. You do not have to have a twitter account to read all my updates - only if you want to have them show up on the account you are already using. They are listed by most recent post first. So, start at the bottom of the page from the last update you read and work your way back to the beginning.
Also, Ken and I will be tweeting each other during American Idol tonight. If you want to be included, @ me and I will give you a search code to place in your tweet so we can include you in the "twitter party/conference call." Yes, we are probably nuts! That's OK with us.
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