Neglect
2 years ago
All of Us
At I's wedding in July 2019. Back row from left: My oldest D (27) and his wife B (27), My 6th K (16), My 3rd L (23), My 5th T (19), and my 7th A (14). Front row from left: My 9th Z (11), My 10th M (9), Me!, My new son-in-law L (23), My 4th I (22), my love D, My 2nd J (25), and my 8th M (11).
Sunday, November 30, 2008
Is the New Blog Working?
I just wanted to check in with you all about the new blog. I see from sitemeter that many people still stop by here, maybe to get the link to the new blog. No one ever comments on the new blog, so I wanted to make sure it's working. For some reason, you have to click the titles to see the pictures, and almost every post has a picture. If the commenting isn't working or you can't see the blog, leave a comment here and let me know. I know I rarely post anymore, but my counter on the new blog shows that people are stopping by there--just no comments and it makes me wonder.
Wednesday, September 03, 2008
Tuesday, September 02, 2008
Test Results and How I'm Doing
The good news is: normal mammogram, normal chest xray and normal colon cancer screening, AND the insurance company agreed to pay for the really expensive ($500+ per dose, one dose every 2 weeks) Humira medication!!
I just took my 3rd dose of Humira (the first 4 doses are once a week). I am feeling pretty good, but I can't really tell if it is the new medication working to put me into remission or just the prednisone keeping the symptoms at bay. I am a little better, less pain in my muscles and my hands are a lot better, less swelling and burning/tingling (but not totally gone), but the rashes are still the same. I see the rheumatologist on Sept. 10 and am curious what his criteria for improvement are. I think they will be lab test results--muscle enzyme measurements. I have elevated muscle enzymes caused by the inflammation.
The second half of the summer was much better than the
first. June was so stressful and in July I was so ill. Even though
long term prednisone use isn't good for you, it is allowing me to
function and even have some fun with my kids, so I am thankful.
Last week I got the results of a
sophisticated GI profile my dr. ordered. It revealed that I have a
common parasite (dientamoeba fragilis) and elevated yeast/fungi levels. I will probably need to
take antibiotics to kill the parasite, which will only cause
proliferation of the yeast/fungi, so then I will probably go on a
restrictive carb diet to starve the yeast. My dr. wanted me to
read over the test results and we'll discuss our plan of action at my
next visit after he talks it over with the rheumatologist.
I had an EMG last week which revealed extensive carpal tunnel syndrome--my wrist nerves are fried--no myelin, but that grows back. I also have proximal muscle weakness in my shoulders and neck, gluteus and hip muscles. It wasn't completely conclusive as to whether this is being caused by the disease or the steroids, because the steroids are masking some of the inflammatory symptoms, but the fact that I haven't been on the steroids very long and the pattern of muscle weakness--proximal (close to the spine) muscle weakness is a sign of the disease, leads the dr. to believe that it is being caused by the disease, not the steroids. This test really hurt, as opposed to the mammogram, which I was worried about since I haven't had one before and I am still nursing, and it didn't hurt at all.
It's ironic that God has sent me the sumo baby--my biggest by far and
a very fiesty, active kid that has to be wrestled at every clothing
and diaper change--at the same time that He sent me an illness which
gives me weak muscles.
So all in all it's better living through pharmaceuticals. I am just impatient to get back to totally normal again so I can do everything I used to do, like open jars and bottles, lift heavy stuff, lift anything over my head, and exercise. (The rheumatologist told me not to exercise while my muscles are inflamed because it will make it worse). I tire more easily too--I just have to take really good care of myself.
This summer was kind of a loss, but the good thing about it being summer when this happened was that the kids were home and have been really helpful, and Daryl was around more in the summer and he has helped a lot, too. I have also been blessed by having a great regular dr. who has taken great care of me while I waited for the rheumatologist appt.
I just took my 3rd dose of Humira (the first 4 doses are once a week). I am feeling pretty good, but I can't really tell if it is the new medication working to put me into remission or just the prednisone keeping the symptoms at bay. I am a little better, less pain in my muscles and my hands are a lot better, less swelling and burning/tingling (but not totally gone), but the rashes are still the same. I see the rheumatologist on Sept. 10 and am curious what his criteria for improvement are. I think they will be lab test results--muscle enzyme measurements. I have elevated muscle enzymes caused by the inflammation.
The second half of the summer was much better than the
first. June was so stressful and in July I was so ill. Even though
long term prednisone use isn't good for you, it is allowing me to
function and even have some fun with my kids, so I am thankful.
Last week I got the results of a
sophisticated GI profile my dr. ordered. It revealed that I have a
common parasite (dientamoeba fragilis) and elevated yeast/fungi levels. I will probably need to
take antibiotics to kill the parasite, which will only cause
proliferation of the yeast/fungi, so then I will probably go on a
restrictive carb diet to starve the yeast. My dr. wanted me to
read over the test results and we'll discuss our plan of action at my
next visit after he talks it over with the rheumatologist.
I had an EMG last week which revealed extensive carpal tunnel syndrome--my wrist nerves are fried--no myelin, but that grows back. I also have proximal muscle weakness in my shoulders and neck, gluteus and hip muscles. It wasn't completely conclusive as to whether this is being caused by the disease or the steroids, because the steroids are masking some of the inflammatory symptoms, but the fact that I haven't been on the steroids very long and the pattern of muscle weakness--proximal (close to the spine) muscle weakness is a sign of the disease, leads the dr. to believe that it is being caused by the disease, not the steroids. This test really hurt, as opposed to the mammogram, which I was worried about since I haven't had one before and I am still nursing, and it didn't hurt at all.
It's ironic that God has sent me the sumo baby--my biggest by far and
a very fiesty, active kid that has to be wrestled at every clothing
and diaper change--at the same time that He sent me an illness which
gives me weak muscles.
So all in all it's better living through pharmaceuticals. I am just impatient to get back to totally normal again so I can do everything I used to do, like open jars and bottles, lift heavy stuff, lift anything over my head, and exercise. (The rheumatologist told me not to exercise while my muscles are inflamed because it will make it worse). I tire more easily too--I just have to take really good care of myself.
This summer was kind of a loss, but the good thing about it being summer when this happened was that the kids were home and have been really helpful, and Daryl was around more in the summer and he has helped a lot, too. I have also been blessed by having a great regular dr. who has taken great care of me while I waited for the rheumatologist appt.
Wednesday, August 13, 2008
Update on Me
I finally saw a rheumatologist today. He believes that I have something called dermatomyositis, which is an autoimmune illness characterized by muscle weakness and a variety of skin rashes. He started me on a medication called Humira, which is a biologic that is injected, weekly at first then biweekly. It works well for about 70% of the people. For now, I will continue taking prednisone as well, and we will reassess in a month. If it works well, then we will taper off the prednisone. It's a good drug in that it doesn't cause any allergic or immune reactions because it's based on proteins already present in the body--it binds to the problematic antibodies, taking them out of commission without disabling my entire immune system the way some drugs can. I will be more susceptible to respiratory infections, but he said it should be nothing I can't fight off. If it works, then once the illness is in remission, then I will stop taking that medication and take something else that will keep me in remission, and hopefully that will be the END of it. He says it is a potentially serious illness that he is treating aggressively since he doesn't want me to lose ground with my muscles getting progressively weaker, but that he doesn't have any patients with this illness that aren't OK.
The only other problem could be that my insurance won't want to pay for this EXTREMELY expensive medication, or will want me to try methotrexate (a drug used in conjunction with chemo that is more toxic with more side effects and not compatible with breastfeeding) first and prove that it doesn't work. The dr. gave me samples to get me started.
If the Humira doesn't work then he will suggest infusions/transfusions of immunoglobulin, which also works well but is a hassle to get the infusions.
The dr. also ordered a chest xray, a mammogram, and a colon cancer screening test, because some people who present with dermatomyositis also have cancer. He emphasized that this was a small risk in my case (less than 10%) because those people tend to be older men, but he needs to rule it out. He also ordered an EMG to assess my muscle weakness and determine if it is being caused by the steroids or the illness. He thinks it's the illness since I'm not on a really high dose of steroids and I haven't been on them that long. He also put in a standing order for monthly labs to measure my muscle enzymes, which are moderately elevated and have been rising despite the prednisone.
That about covers it. So everybody please pray that I am in the 70% that respond well to Humira!
The only other problem could be that my insurance won't want to pay for this EXTREMELY expensive medication, or will want me to try methotrexate (a drug used in conjunction with chemo that is more toxic with more side effects and not compatible with breastfeeding) first and prove that it doesn't work. The dr. gave me samples to get me started.
If the Humira doesn't work then he will suggest infusions/transfusions of immunoglobulin, which also works well but is a hassle to get the infusions.
The dr. also ordered a chest xray, a mammogram, and a colon cancer screening test, because some people who present with dermatomyositis also have cancer. He emphasized that this was a small risk in my case (less than 10%) because those people tend to be older men, but he needs to rule it out. He also ordered an EMG to assess my muscle weakness and determine if it is being caused by the steroids or the illness. He thinks it's the illness since I'm not on a really high dose of steroids and I haven't been on them that long. He also put in a standing order for monthly labs to measure my muscle enzymes, which are moderately elevated and have been rising despite the prednisone.
That about covers it. So everybody please pray that I am in the 70% that respond well to Humira!
Sunday, July 13, 2008
A Driver!
My oldest turned 16 in June. He got his driver's license that day, and so far has done a fabulous job driving himself and his siblings around as well as running errands for me.
Note the large candlesticks. His harried mother forgot to buy birthday candles.
He is a really special kid, a true delight. I can't believe how the years have flown.
What Next? (Prayers please!)
A little over a month ago I began having what I thought were carpal tunnel symptoms, mild numbness and tingling in both hands. I'd had this during pregnancy, but it went away. Initially, I ignored it, but it rapidly progressed to a lot of pain, particularly in my wrists. I saw a doctor who prescribed a splint and physical therapy on June 19. After a few days, my right hand, which was much worse, began to swell. I thought it was being caused by the splint. The numbness and tingling at night had progressed to severe burning and pain, waking me many, many times at night. Meanwhile, I was feeling very fatigued, but the interrupted sleep combined with the last week of school, 2 birthdays, and Daryl being out of town for 3 weeks in a row, led me to believe that it was being caused by those external circumstances.
The next week I saw my osteopathic physician for manipulation to help with the carpal tunnel. I mentioned my fatigue, along with a rash that I have had on my chest since April, that was small but had suddenly covered my entire chest, and the deep, dark circles that had suddenly appeared under my eyes. He ran a battery of blood tests. Several days later he called to tell me that everything was normal. I am hypothyroid and we both suspected that perhaps my levels had shifted and I was now undermedicated, but that was not the case. I left that morning, June 27, for a vacation in Telluride, CO with my family. I planned to see a neurologist upon my return to find out what I could do about the intense nerve pain I was having, which was still keeping me up at night.
A few days into my trip I got another call from my physician to tell me that he had just received the results of another blood test that took a little longer than the others, for an autoimmune disorder, and it was really high. The test was for antinuclear antibodies (ANA) and it was 2560, speckled pattern. Normal is under 40. I also had mildly elevated CRP and Rheumatoid factor numbers. At this point my right hand was so swollen I couldn't close it at all and it was also very weak. My left hand was also swollen but not as badly. The circles under my eyes were much deeper, and there was now some swelling under my eyes. I had a rough scaly rash on my elbows and numerous bumps, lesions, and calcium deposits on my hands. While the rest of my family enjoyed the great outdoors, mountain biking, hiking and white water rafting, I mainly rested and kept track of the new symptoms that appeared daily. We changed our plane tickets and came home a day early.
I saw my physician the next day, July 9. By this point my eyes were quite swollen and the normal creases that go from the inner eye down the cheek were purple and very deep. My eyelids and the area under my brows had turned a light brown shade. This is known as a heliotrope rash. My physician consulted with a rheumatologist, who told him what additional tests to run on me and suggested he start me on prednisone immediately, and promised to try and get me in his schedule within two weeks.
I dutifully donated my 8 vials of blood.
The prednisone has helped, reducing my symptoms but not eliminating them. It was frightening how quickly this all happened. Hopefully once the new lab results are in (next week) we will have a better idea what the illness is and how to control it. Possible diagnoses are things like rheumatoid arthritis, lupus, scleroderma, dermatomyositis, etc. The prednisone is just a short term solution to stop it in it's tracks. The rheumatologist is supposed be really good, really nice, and is a the father of a large family. I hope he lives up to my expectations!
Food and sunlight and hormonal changes are all known triggers for autoimmune flareups. My only theory at this point is that when we went to Florida in early April and I spent a week baking on the beach, it triggered this. That was when the first symptom, the chest rash, appeared. I have previously had sun poisoning, an allergic reaction to the sun, in tropical climates and that is what I thought it was except that it didn't go away and my skin gradually grew leathery in that spot. After 7 years of living in cloudy Michigan, perhaps that giant blast of sunshine was more than my body, which has previously shown sun sensitivity, could handle.
So if you pray, please pray that this is quickly diagnosed and it is not severe, and manageable. I am thankful that it occurred during the summer when my responsibilities are less and my older children can help more. I have had trouble doing things like changing diapers and snapping baby clothes, opening jars and bottles, clipping my fingernails, cutting food with a knife, etc.
And I'd be interested in hearing the story of anyone who has battled a similar problem.
The next week I saw my osteopathic physician for manipulation to help with the carpal tunnel. I mentioned my fatigue, along with a rash that I have had on my chest since April, that was small but had suddenly covered my entire chest, and the deep, dark circles that had suddenly appeared under my eyes. He ran a battery of blood tests. Several days later he called to tell me that everything was normal. I am hypothyroid and we both suspected that perhaps my levels had shifted and I was now undermedicated, but that was not the case. I left that morning, June 27, for a vacation in Telluride, CO with my family. I planned to see a neurologist upon my return to find out what I could do about the intense nerve pain I was having, which was still keeping me up at night.
A few days into my trip I got another call from my physician to tell me that he had just received the results of another blood test that took a little longer than the others, for an autoimmune disorder, and it was really high. The test was for antinuclear antibodies (ANA) and it was 2560, speckled pattern. Normal is under 40. I also had mildly elevated CRP and Rheumatoid factor numbers. At this point my right hand was so swollen I couldn't close it at all and it was also very weak. My left hand was also swollen but not as badly. The circles under my eyes were much deeper, and there was now some swelling under my eyes. I had a rough scaly rash on my elbows and numerous bumps, lesions, and calcium deposits on my hands. While the rest of my family enjoyed the great outdoors, mountain biking, hiking and white water rafting, I mainly rested and kept track of the new symptoms that appeared daily. We changed our plane tickets and came home a day early.
I saw my physician the next day, July 9. By this point my eyes were quite swollen and the normal creases that go from the inner eye down the cheek were purple and very deep. My eyelids and the area under my brows had turned a light brown shade. This is known as a heliotrope rash. My physician consulted with a rheumatologist, who told him what additional tests to run on me and suggested he start me on prednisone immediately, and promised to try and get me in his schedule within two weeks.
I dutifully donated my 8 vials of blood.
The prednisone has helped, reducing my symptoms but not eliminating them. It was frightening how quickly this all happened. Hopefully once the new lab results are in (next week) we will have a better idea what the illness is and how to control it. Possible diagnoses are things like rheumatoid arthritis, lupus, scleroderma, dermatomyositis, etc. The prednisone is just a short term solution to stop it in it's tracks. The rheumatologist is supposed be really good, really nice, and is a the father of a large family. I hope he lives up to my expectations!
Food and sunlight and hormonal changes are all known triggers for autoimmune flareups. My only theory at this point is that when we went to Florida in early April and I spent a week baking on the beach, it triggered this. That was when the first symptom, the chest rash, appeared. I have previously had sun poisoning, an allergic reaction to the sun, in tropical climates and that is what I thought it was except that it didn't go away and my skin gradually grew leathery in that spot. After 7 years of living in cloudy Michigan, perhaps that giant blast of sunshine was more than my body, which has previously shown sun sensitivity, could handle.
So if you pray, please pray that this is quickly diagnosed and it is not severe, and manageable. I am thankful that it occurred during the summer when my responsibilities are less and my older children can help more. I have had trouble doing things like changing diapers and snapping baby clothes, opening jars and bottles, clipping my fingernails, cutting food with a knife, etc.
And I'd be interested in hearing the story of anyone who has battled a similar problem.
Wednesday, June 11, 2008
Good News, Bad News
About 3 weeks ago, my darling baby son waved his delectably chubby arm and knocked over a large glass of water....onto my laptop. Although my reflexes were abnormally quick as a grabbed the computer and hoisted it in the air, allowing most of the water to run off the keyboard, it promptly shut down. Later in the day, I went to turn it on, and it did briefly power on before the screen went squiggly crazy and then it shut right down again. After four days of trying to turn it on several times a day, I prepared to take it in for repair, pausing to push the on button one more time. To my joy, it powered on and worked perfectly...for the next week.
Suddenly, it would not turn on. After a week of random power button pushing, hoping the magic would recur, I gave up and called Apple. They told me that my computer was one of a batch that had "known battery issues" and sent me a new battery. When it arrived and was installed, on came the computer! It worked fine....until the battery ran out of charge. The computer would not turn on, once again. Into the Apple store I went to consult with a "genius". Of course, when HE pushed the button it turned on! He pronounced it fine. He did, however, notice that the corner of the plastic keyboard casing had a crack in it and offered to replace it for me (I have the extended warranty). I accepted. When I returned several hours later to pick it up, the young man who retrieved it for me said, "Did they talk to you about the liquid damage?" (I had not felt it was necessary to tell them about an event that had happened weeks before!) "No," I said with surprise. He informed me that there was evidence of an extensive liquid spill, and that the power button had been shorted out. That was now repaired, but any further problems would not be under warranty because the warranty does not cover liquid damage. I told him that I understood, never acknowledging that any spill had in fact occurred. My darling daughters were shocked at my behavior, but I pointed out to them that I had not at any point lied, but felt it best not to admit to anything.
Once again, the computer worked for a week...then would not turn on. Back I went to the Apple store. BAAAAAD NEWS: I was informed that the cost of the repair would be $300 less than the cost of a new laptop. After a consultation with Daryl, we decided that a new laptop, with more memory, a faster processor and all the latest software, as well as a new warranty, was the way to go. While discussing my purchase with the salesman, I got the GOOD NEWS: Students and educators are eligible for a "back to school" special, which lowers the price of the computer by $100 and gives you a FREE Ipod of your choice. Daryl is an educator, so I took advantage of that. Additionally, Apple is running a special (for anyone, not just students and eduators) that gives you a $99 rebate if you purchase a $99 printer, making the actual cost of the printer $6 (sales tax). The Ipod was a rebate special too, but the salesman was kind enough to do the rebate paperwork online with me in the store, and Apple sends rebate checks out in 3-5 DAYS. I was completely flabbergasted, looking for the catch, but there appears to be none.
I vowed to myself that I would learn to use many of the really cool features and programs on my computer this time, including the web hosting service. So look for changes to the blog very soon!
Suddenly, it would not turn on. After a week of random power button pushing, hoping the magic would recur, I gave up and called Apple. They told me that my computer was one of a batch that had "known battery issues" and sent me a new battery. When it arrived and was installed, on came the computer! It worked fine....until the battery ran out of charge. The computer would not turn on, once again. Into the Apple store I went to consult with a "genius". Of course, when HE pushed the button it turned on! He pronounced it fine. He did, however, notice that the corner of the plastic keyboard casing had a crack in it and offered to replace it for me (I have the extended warranty). I accepted. When I returned several hours later to pick it up, the young man who retrieved it for me said, "Did they talk to you about the liquid damage?" (I had not felt it was necessary to tell them about an event that had happened weeks before!) "No," I said with surprise. He informed me that there was evidence of an extensive liquid spill, and that the power button had been shorted out. That was now repaired, but any further problems would not be under warranty because the warranty does not cover liquid damage. I told him that I understood, never acknowledging that any spill had in fact occurred. My darling daughters were shocked at my behavior, but I pointed out to them that I had not at any point lied, but felt it best not to admit to anything.
Once again, the computer worked for a week...then would not turn on. Back I went to the Apple store. BAAAAAD NEWS: I was informed that the cost of the repair would be $300 less than the cost of a new laptop. After a consultation with Daryl, we decided that a new laptop, with more memory, a faster processor and all the latest software, as well as a new warranty, was the way to go. While discussing my purchase with the salesman, I got the GOOD NEWS: Students and educators are eligible for a "back to school" special, which lowers the price of the computer by $100 and gives you a FREE Ipod of your choice. Daryl is an educator, so I took advantage of that. Additionally, Apple is running a special (for anyone, not just students and eduators) that gives you a $99 rebate if you purchase a $99 printer, making the actual cost of the printer $6 (sales tax). The Ipod was a rebate special too, but the salesman was kind enough to do the rebate paperwork online with me in the store, and Apple sends rebate checks out in 3-5 DAYS. I was completely flabbergasted, looking for the catch, but there appears to be none.
I vowed to myself that I would learn to use many of the really cool features and programs on my computer this time, including the web hosting service. So look for changes to the blog very soon!
Thursday, May 15, 2008
What Book Are You?
Here's a cool, and short quiz. Below are my results:
You're Stranger in a Strange Land!
by Robert Heinlein
Most people look at you and think of you as a Martian, even though you
were born on Earth. Silly Earthlings, er, people. Anyway, you've been telling people
about free love and relaxing like it's some radical idea. Most of them want you to go
back to the '60's (or Mars), but others are in your groove. Grok on!
Take the Book Quiz
at the Blue Pyramid.
Look What I can Do!
Sit up!! It's all downhill from here, because next comes crawling, and I get to spend the next 6 months chasing him around.
Thursday, April 24, 2008
Sticking out my tongue
I can't even express how much we all adore this boy. He is loved and fought over, never alone, never ignored. For me, it is falling in love all over again with a baby. So distracting--It's hard to get anything done when he's around!
Lately
Sorry my posts are so few and far between. I have been busily enjoying living life instead of blogging it. The past few months since M's birth have been very sweet ones for my family. We are blissfully happy. We love hanging out together and having a good time with one another.
Now that spring is here, wev'e been doing things outdoors like:
Baptism
M. was baptized on Mar. 30, 2008. Here we all are in front of the altar at church after the baptism was over. From left to right: In front of Daryl is K. and A. Next is me, holding M. Then J. and D. are in the back row, and I., L., and T. in front of them.
Tuesday, March 25, 2008
Very Good Friday
On Good Friday, in addition to going to church, I told the kids that we weren't going to watch tv, use the computer or have candy or other treats, as a sacrifice to help us remember that Jesus sacrificed His life for our sins. After church, we came home, ate lunch, and dyed Easter eggs. Then the snow began to fall, eventually accumulating 8 inches. The kids went out and played in it for while. Later they just played together, my 15 year old son wrestling with his 3, 4, and 7 year old siblings. They got out the cheap Dance Dance revolution game we got for Christmas and danced and laughed. Then we had a big family dinner. All in all, a lovely day. Thank you, Jesus.
Love
Today I took K, A, and M to the local Hands-On science center. One of the displays was 2 giant metal discs shaped like satellite dishes and placed about 100 feet apart. If you whispered into one, the person standing at the other one could hear you. I stood near A. while K. whispered to her. I asked her if she could hear him, and she said yes. "What did he say?" I asked. She replied, "He said, 'I love you, A." Tears came to my eyes. She whispered back to him, and I called over to him, "What did she say?" "She said 'I love you K."
Sunday, March 02, 2008
Getting Sick
Don't A. and I look good? This was about an hour before we came down with the stomach flu.
Or here
On the couch, also in my pjs!
I know it's hard to imagine someone, so I am posting these pictures of me on the computer so you can imagine me sending you a message, posting on a message board, blogging, etc.
I have no idea why I'm frowning. The kids say I always look that way when I'm concentrating on the computer. Maybe I need my eyes checked?
Monday, February 18, 2008
Don't think much of it
I think his expression in these photos says it all. Hopefully he'll like it better when he's a little older.
Tuesday, February 12, 2008
What Happened Next
By the time we got home, M. was very out of sorts, crying a lot and refusing to nurse. He'd been intermittently refusing to nurse throughout the day, going 4+ hours without nursing, then guzzling, then crying afterwards. He was definitely uncomfortable. I suspected ear infections, so in the morning I took him and T., who was still feverish, to the pediatrician. T's oxygen level was a little low, but she responded to a breathing treatment, and they determined that she had walking pneumonia. When they checked M's oxygen levels, they were in the low 90s. They gave him a breathing treatment, checked again, and they hadn't improved. In addition, his respiratory rate was too high and he was working hard to breathe--his chest was really sucking in as he was using a lot of muscle power to breathe. So I got the bad news--he needed to go to the ER. I called Daryl, who didn't answer, and our babysitter, who said she'd meet me at the pediatrician's office to pick up T., K. and A. She lives 30 minutes away, however, and when they heard that they said it was too long, and that she should meet me at the ER. I headed to the ER, and along the way I got hold of Daryl, who said he'd meet me there.
Once we were at the ER, and M. had been thoroughly examined, they said they wanted to observe him to see what happened when he went to sleep. They administered another breathing treatment and x-rayed him. He didn't have pneumonia, which was good news. When he fell asleep, however, his oxygen levels fell into the low 80s, which was unacceptable. When asleep, he wasn't working as hard to breathe and consequently he was getting a lot less air. He needed oxygen during those times, so he was admitted. He had bronchiolitis, which it turned out was caused by RSV. They swabbed his nose and ran a culture to determine what organism was causing it, in order to know what to expect based on the typical course of that particular illness.
As the evening went on, his oxygen levels were very good even while sleeping, and he was receiving only a tiny amount of supplemental oxygen. Since they had told me that he would have to not need oxygen for 24 hours before he could be released, I requested that we try turning it off around 8pm to see how he did. The respiratory therapist was happy to do that. The rest of the evening and through the night his oxygen levels were in the low 90s when asleep without any oxygen, which they said was acceptable.
His roommate also had bronchiolitis. I was never told whether she also had RSV. Hopefully she did, so they weren't exchanging germs. She was 11 months old, and her father and grandmother visited, but did not stay the night with her. She was sicker than M., and had previously been in intensive care. Her condition, combined with being alone, made her cry most of the night. The nurses did come in and attend to her, a lengthy routine of suctioning her, changing her diaper, giving her a fresh bottle, and comforting her, which she cried through. The staff levels aren't sufficient to provide continuous one on one with a child. I felt sorry for her, and for me, as I was totally exhausted.
Our room was small, filled with 2 giant cribs and other equipment. Parents weren't allowed to use the bathroom, despite the fact that neither of the patients in our room could use it, because it was shared between 2 rooms, and there were older children in the adjoining room that did use the bathroom. I had to walk a long way down the hall to a restroom, and leave M. behind, since he was attached to an oxygen tube and pulse-oximeter. There was a short, narrow padded bench in the room for each child's parent(s). It was only about 4 feet long, and impossible to sleep on. Since M. likes to sleep with me, and I was worried that if I feel asleep on the bench while holding him I'd drop him, and his crib was bigger than my bench, I got into the crib with him. I did fall asleep for a short while, despite the crying and constant interruptions.
Then I was rudely awakened by a doctor that I hadn't met. (This is a teaching hospital and consequently you meet many different doctors, residents, medical students, etc.) She wanted to know if M. had a wet diaper on or not, because the previous diaper had not been weighed, which is what they were doing to measure output and be sure M. was not becoming dehydrated. I had left it in the proper place but apparently the nurse had forgotten. The doctor informed me that if M. didn't have a wet diaper on they would have to put in an IV right away because that would mean he was dehydrated. I knew he had a very wet diaper on because he'd fallen asleep with it needing to be changed, and I hadn't wanted to wake him to do it, so I left it on, thinking he'd wake up later and I'd do it then. He was now sound asleep, of course, but I had to change it immediately. I handed it to her, saying, "Here--now you can weigh it." She took it with a look of disgust, then set it down and said, "A nurse will do that." An IV was not necessary.
In the morning our pediatrician came. She felt that he was doing much better and could go home. Of course, it took a long time to get the paperwork completed, etc. and he was actually discharged around 11am.
This was the University of Michigan's Mott Children's Hospital. They are in the process of building a new children's hospital, which the nurse told me will feature private rooms that contain a bed for the parent. This is essential, since if a child were there for a lengthy stay the abysmal accommodations would really take a toll on the parents. I know that the hospital expects parents to stay and help care for their child because Daryl's niece had surgery there recently, and in the pre-op packet her parents received was a letter stating that.
I am so lucky that we have never had a child admitted to the hospital before! It was a learning experience.
M. is fine now. He recovered quickly, thankfully.
Once we were at the ER, and M. had been thoroughly examined, they said they wanted to observe him to see what happened when he went to sleep. They administered another breathing treatment and x-rayed him. He didn't have pneumonia, which was good news. When he fell asleep, however, his oxygen levels fell into the low 80s, which was unacceptable. When asleep, he wasn't working as hard to breathe and consequently he was getting a lot less air. He needed oxygen during those times, so he was admitted. He had bronchiolitis, which it turned out was caused by RSV. They swabbed his nose and ran a culture to determine what organism was causing it, in order to know what to expect based on the typical course of that particular illness.
As the evening went on, his oxygen levels were very good even while sleeping, and he was receiving only a tiny amount of supplemental oxygen. Since they had told me that he would have to not need oxygen for 24 hours before he could be released, I requested that we try turning it off around 8pm to see how he did. The respiratory therapist was happy to do that. The rest of the evening and through the night his oxygen levels were in the low 90s when asleep without any oxygen, which they said was acceptable.
His roommate also had bronchiolitis. I was never told whether she also had RSV. Hopefully she did, so they weren't exchanging germs. She was 11 months old, and her father and grandmother visited, but did not stay the night with her. She was sicker than M., and had previously been in intensive care. Her condition, combined with being alone, made her cry most of the night. The nurses did come in and attend to her, a lengthy routine of suctioning her, changing her diaper, giving her a fresh bottle, and comforting her, which she cried through. The staff levels aren't sufficient to provide continuous one on one with a child. I felt sorry for her, and for me, as I was totally exhausted.
Our room was small, filled with 2 giant cribs and other equipment. Parents weren't allowed to use the bathroom, despite the fact that neither of the patients in our room could use it, because it was shared between 2 rooms, and there were older children in the adjoining room that did use the bathroom. I had to walk a long way down the hall to a restroom, and leave M. behind, since he was attached to an oxygen tube and pulse-oximeter. There was a short, narrow padded bench in the room for each child's parent(s). It was only about 4 feet long, and impossible to sleep on. Since M. likes to sleep with me, and I was worried that if I feel asleep on the bench while holding him I'd drop him, and his crib was bigger than my bench, I got into the crib with him. I did fall asleep for a short while, despite the crying and constant interruptions.
Then I was rudely awakened by a doctor that I hadn't met. (This is a teaching hospital and consequently you meet many different doctors, residents, medical students, etc.) She wanted to know if M. had a wet diaper on or not, because the previous diaper had not been weighed, which is what they were doing to measure output and be sure M. was not becoming dehydrated. I had left it in the proper place but apparently the nurse had forgotten. The doctor informed me that if M. didn't have a wet diaper on they would have to put in an IV right away because that would mean he was dehydrated. I knew he had a very wet diaper on because he'd fallen asleep with it needing to be changed, and I hadn't wanted to wake him to do it, so I left it on, thinking he'd wake up later and I'd do it then. He was now sound asleep, of course, but I had to change it immediately. I handed it to her, saying, "Here--now you can weigh it." She took it with a look of disgust, then set it down and said, "A nurse will do that." An IV was not necessary.
In the morning our pediatrician came. She felt that he was doing much better and could go home. Of course, it took a long time to get the paperwork completed, etc. and he was actually discharged around 11am.
This was the University of Michigan's Mott Children's Hospital. They are in the process of building a new children's hospital, which the nurse told me will feature private rooms that contain a bed for the parent. This is essential, since if a child were there for a lengthy stay the abysmal accommodations would really take a toll on the parents. I know that the hospital expects parents to stay and help care for their child because Daryl's niece had surgery there recently, and in the pre-op packet her parents received was a letter stating that.
I am so lucky that we have never had a child admitted to the hospital before! It was a learning experience.
M. is fine now. He recovered quickly, thankfully.
Sunday, February 10, 2008
Heading Home
On Monday morning we went to downtown Disney, where we bought some souvenirs. I. had begged and begged for this charm necklace.
M. seemed worse, and I was worried, but didn't want to miss my flight and stay in Orlando without my family. I consulted with our pediatrician and decided to fly home.
By the next morning, however...
More climbing
Left to right--L., age 12; K., age 4; A., age3; I., age 10.
A. was feeling much better this day. The steroids had worn off and she was happy all day. T. was ill, and we rented her a stroller to ride in, which was a big help.
Cold Day
K. is quite a character, and wore his ears over his hood all day.
The temperature had dropped dramatically overnight, and it was quite chilly on Sunday.
Once again, the Magic Kingdom was open until 11pm and we had planned to head over there after the Animal Kingdom closed at 6pm, but by now the temperatures had dropped into the 40s and it was windy, so we decided we were done.
I was disappointed because I'd really wanted to go back there. There was a lot we didn't do, due to long lines, a sick toddler, and it being the first day and we hadn't learned yet how to maximize our time.
Overall, considering the circumstances, we had a really good time.
Getting Sick
On Sunday I was awoken very early by M., who had coughed more each day and gradually become more and more congested. He was now coughing a LOT and appeared to be having trouble breathing. His ribs were sucking in and out, which the dr. had told me to watch out for. So off we went to the ER around 7am, which was conveniently next door to our hotel.
They listened to him, did a chest x-ray, and took his pulse-oxygen levels. They determined that he was fine, that the congestion was all in his throat and nose, and said that the chest movements we observed were being caused by the fact that he was attempting to nose breathe through a stuffed nose, so he had to work harder to draw air, but that if he'd open his mouth he would have no trouble breathing. I was given saline and a bulb syringe with instructions to suction him vigorously.
When we returned to the hotel room around 9am, T. told me that she didn't feel well. I took her temperature--101F. Gave her some Motrin and off we went to the Animal Kingdom.
Wearing my baby
I carried M. in the pouch a lot of the time, and the rest of the time he rode in his carseat in the stroller.
Those who didn't have slickers got really wet
The Magic Kingdom was open until 11pm, and we had intended to go back there in the evening after Epcot, but the younger kids were exhausted, and soaked to the skin, so Daryl dropped the older kids at the Magic Kingdom, took the young ones and I to the hotel, and then joined the older ones for some late night fun. It continued to rain all evening, just not as hard.
Wearing our slickers
We spent the majority of Saturday at Epcot, which began cold and foggy, quickly became hot and muggy, later changed to perfect, and then at dusk it began to pour--literally a torrential downpour.
The Princess in her Kingdom
Our first full day, Friday, we spent the morning in the Magic Kingdom and then rushed to Hollywood studios, where we had dinner reservations at a too fancy and too expensive restaurant, but they included reserved seats for a fantastic show. One of the things we learned was that 2 restaurant reservations for the same day is difficult, because it takes a long time to go from park to park, and it was stressful to try and do it at a certain time. You can't get a seat in a sit-down restaurant without a reservation, however.
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About Me
- Paula
- SE Michigan, United States
- Mother to 10 fabulous kids, ages 9 to 27 years! Mother-in-law to 2 more awesome young adults! Married for 32 years to my best friend.
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Everyone Needs A Cookie2 years ago
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