Something clicked with Jason yesterday and he just started walking longer distances and with more confidence. Got one jaunt on video. Sorry it's dark, but my camera settings must have gotten changed, and I never do anything without looking at the manual.
Also, he fell last night (what appeared to be a minor bump) into his walking toy and broke most of his cleft side upper incisor off. I am taking him to the dentist today to have it checked. I am bummed because now he will have one more different thing about him - a missing tooth right in front. Also, I am concerned that he damaged a bit of his palate repair.
Have lots going on right now. Will write about it all later.
Wednesday, May 28, 2008
Monday, May 26, 2008
Jason's Story pt. 2
When a child is born with a birth defect you know that their life will be different than the child who is born without. I don't know what all Jason faces in the future because of his congenital anomaly, but I do know that he will have some unique challenges. It has been my endeavor to document his experience. For that reason I am posting the rest of the second surgical repair story that I began several weeks ago. It is history, but it is a part of him. I wonder, if in fact, it will remain with him always and become one of his life's differences.
Surgery to repair Jason's palate and to insert ear tubes was on a Friday. He was discharged on Saturday. Because he has a penicillin allergy and was doing exceptionally well, the surgeon's medical assistant decided to forgo the antibiotic that typically is prescribed after this surgery because the drug of choice was unavailable at our pharmacy. About twelve hours after discharge (in the wee hours of Sunday) he had a temperature of 102.6 and foul odor from the surgical site. Both of those things were listed in discharge instructions as reasons to immediately call the doctor. I talked to the medical assistant who decided that we should find the antibiotic and start Jason on it. John ended up driving to a pharmacy some distance away that had the drug we needed, but his prescription drug policy wouldn't pay for it because it wasn't at an allowed pharmacy. Thankfully, the cash price, while not cheap, was within reach. The antibiotic was started early Sunday morning.
During all this I was still giving Jason Tylenol and Motrin around the clock for pain. On Monday I decided to discontinue that and see how he managed. His fever continued, but he didn't seem to have troublesome pain. I called the surgeon's office again Monday afternoon because the fever wasn't subsiding even though he'd been on the antibiotic for 36 hours. They assured me that he was probably fine - maybe just getting a "little cold or something."
Tuesday the fever persisted. I called the surgeon's office again with the same result. I called the pediatrician's office where I took him that afternoon. The doctor there couldn't find anything wrong. She concluded that he was still in considerable pain and told me to start the Tylenol/Motrin routine again. During the night Tuesday Jason's fever climbed to nearly 104 in spite of the fever reducers. By this time I was so worried about the possibility that Jason had contracted a hospital bug of some sort. Nothing else made sense. I called the pediatrician in the middle of night who suggested that we take him to emergency and investigate. While there Jason was catheterized to check for a bladder infection, had a chest x-ray and had an IV inserted, first for a blood draw and secondly, for potential treatment. (I actually appreciated that because he would have only had one poke no matter what they needed to do.) The urine was negative. The blood count showed an elevated white count, indicative of infection. The x-ray, we were told, showed some pneumonia. We took Jason home, satisfied that we had found an answer.
Wednesday Jason showed no improvement. Though on the strong antibiotic for three days and continual fever reducers his temperature remained persistently in the 103 - 104 range. At that point, I was scared. Only a hospital bug, I told myself, could be so stubborn. I called the pediatrician again. He was quite alarmed too, and gladly saw Jason. Reading the radiologist's report of Jason's chest x-ray he learned that there wasn't any pneumonia; it was only a shadow that the ER doctor saw. He recommended admitting Jason to the hospital to determine the cause of infection, though frustrated that he had been given antibiotics before determining the culprit. (The presence of antibiotics did not allow for accurate culturing of the the blood and urine.) The pediatrician expressed displeasure that the surgeon had not been in contact with us at all himself. He really wanted him to check the surgical site. At the pediatrician's direction we took Jason to emergency again to be admitted.
The emergency room was crowded and dirty. We waited about five hours before getting to a room. That is still one of my biggest frustrations about the whole ordeal. Parents had children there for pretty minor things. I saw one report that concluded the child had ringworm, an innocuous fungus which can be successfully treated with vinegar. (Just briefly, I might say here that if we end up with universal health care it will be many times worse than that! Our Canadian and Brazilian friends tell horrible stories of their respective government managed health care.) While in emergency they started two IVs because the first one, in the foot, was accidentally pulled loose by one of the health care workers.
They swabbed the good side of his nose to check for RSV - twice so they could avoid the surgery site and fool the lab into thinking they had been thorough and done both sides. That was done solely for the purpose of bed placement. The CDC (thankfully, I must concede) has protocol for the placement of children in shared rooms. Non RSV patients get other non RSV patients for roommates. Jason's swab was negative, thus he was placed with a child who was also negative. However, because the swab had to be cultured for a period time to determine a definite negative, all health care workers were put under RSV protocol. (This was just so silly. All the nurses and doctors complained, some even to the CDC snitch, a.k.a. bed placement personnel, to no avail. In fact, the restriction was not lifted even after the RSV culture came back negative.)
This was a happy moment with Dad during our long ER wait in spite of the high fever and steady prodding by staff.
Thursday and Friday are a blur to me. During those two days multiple doctors came to check Jason and listen to the whole story. (John teased me once for sighing heavily when I was asked by yet another doctor to tell what had brought us to the current situation.) More blood was sent to the lab necessitating more needles poking, sometimes in multiple places before successfully getting the required sample. His white count was more typical of a bacterial infection. He had his IV replaced again when one failed. He was given two very powerful antibiotics and watched closely for any clues. The surgeon came and determined that the surgery site looked fine. He maintained that it was probably a virus or something. All others were clueless and very concerned.
Saturday came bringing a rash! I knew what that meant without a doctor's help. He had roseola, a harmless childhood virus with seemingly alarming symptoms. That rash was beautiful to everyone! It was a wonderful answer to all our questions. Thank God for His mercy!
We took Jason home Sunday afternoon, ten days after surgery.
Sadly, the story doesn't end there. In some ways the end of it is the beginning of another. Since that ordeal Jason has been terrified of people other than those with whom he lives. He is tougher and less affectionate with his siblings. He has become a fearful child, coming near panic in unfamiliar circumstances. Already these things are less than what they were right after the hospital stay. Somehow, though, I think they will be a part of what he struggles with over the years. I think he will not be what he would have been if these events had not transpired. I am not being a doom sayer; he will likely be better for it - stronger and more compassionate. In some way, though, it hurts that mother's heart that hopes to rescue her little ones from all harm.
P.S. The pediatrician said he had never seen a surgery patient coincidentally get roseola at the same time. We both concluded that we would do the same thing all over again.
Surgery to repair Jason's palate and to insert ear tubes was on a Friday. He was discharged on Saturday. Because he has a penicillin allergy and was doing exceptionally well, the surgeon's medical assistant decided to forgo the antibiotic that typically is prescribed after this surgery because the drug of choice was unavailable at our pharmacy. About twelve hours after discharge (in the wee hours of Sunday) he had a temperature of 102.6 and foul odor from the surgical site. Both of those things were listed in discharge instructions as reasons to immediately call the doctor. I talked to the medical assistant who decided that we should find the antibiotic and start Jason on it. John ended up driving to a pharmacy some distance away that had the drug we needed, but his prescription drug policy wouldn't pay for it because it wasn't at an allowed pharmacy. Thankfully, the cash price, while not cheap, was within reach. The antibiotic was started early Sunday morning.
During all this I was still giving Jason Tylenol and Motrin around the clock for pain. On Monday I decided to discontinue that and see how he managed. His fever continued, but he didn't seem to have troublesome pain. I called the surgeon's office again Monday afternoon because the fever wasn't subsiding even though he'd been on the antibiotic for 36 hours. They assured me that he was probably fine - maybe just getting a "little cold or something."
Tuesday the fever persisted. I called the surgeon's office again with the same result. I called the pediatrician's office where I took him that afternoon. The doctor there couldn't find anything wrong. She concluded that he was still in considerable pain and told me to start the Tylenol/Motrin routine again. During the night Tuesday Jason's fever climbed to nearly 104 in spite of the fever reducers. By this time I was so worried about the possibility that Jason had contracted a hospital bug of some sort. Nothing else made sense. I called the pediatrician in the middle of night who suggested that we take him to emergency and investigate. While there Jason was catheterized to check for a bladder infection, had a chest x-ray and had an IV inserted, first for a blood draw and secondly, for potential treatment. (I actually appreciated that because he would have only had one poke no matter what they needed to do.) The urine was negative. The blood count showed an elevated white count, indicative of infection. The x-ray, we were told, showed some pneumonia. We took Jason home, satisfied that we had found an answer.
Wednesday Jason showed no improvement. Though on the strong antibiotic for three days and continual fever reducers his temperature remained persistently in the 103 - 104 range. At that point, I was scared. Only a hospital bug, I told myself, could be so stubborn. I called the pediatrician again. He was quite alarmed too, and gladly saw Jason. Reading the radiologist's report of Jason's chest x-ray he learned that there wasn't any pneumonia; it was only a shadow that the ER doctor saw. He recommended admitting Jason to the hospital to determine the cause of infection, though frustrated that he had been given antibiotics before determining the culprit. (The presence of antibiotics did not allow for accurate culturing of the the blood and urine.) The pediatrician expressed displeasure that the surgeon had not been in contact with us at all himself. He really wanted him to check the surgical site. At the pediatrician's direction we took Jason to emergency again to be admitted.
The emergency room was crowded and dirty. We waited about five hours before getting to a room. That is still one of my biggest frustrations about the whole ordeal. Parents had children there for pretty minor things. I saw one report that concluded the child had ringworm, an innocuous fungus which can be successfully treated with vinegar. (Just briefly, I might say here that if we end up with universal health care it will be many times worse than that! Our Canadian and Brazilian friends tell horrible stories of their respective government managed health care.) While in emergency they started two IVs because the first one, in the foot, was accidentally pulled loose by one of the health care workers.
They swabbed the good side of his nose to check for RSV - twice so they could avoid the surgery site and fool the lab into thinking they had been thorough and done both sides. That was done solely for the purpose of bed placement. The CDC (thankfully, I must concede) has protocol for the placement of children in shared rooms. Non RSV patients get other non RSV patients for roommates. Jason's swab was negative, thus he was placed with a child who was also negative. However, because the swab had to be cultured for a period time to determine a definite negative, all health care workers were put under RSV protocol. (This was just so silly. All the nurses and doctors complained, some even to the CDC snitch, a.k.a. bed placement personnel, to no avail. In fact, the restriction was not lifted even after the RSV culture came back negative.)
This was a happy moment with Dad during our long ER wait in spite of the high fever and steady prodding by staff.
Thursday and Friday are a blur to me. During those two days multiple doctors came to check Jason and listen to the whole story. (John teased me once for sighing heavily when I was asked by yet another doctor to tell what had brought us to the current situation.) More blood was sent to the lab necessitating more needles poking, sometimes in multiple places before successfully getting the required sample. His white count was more typical of a bacterial infection. He had his IV replaced again when one failed. He was given two very powerful antibiotics and watched closely for any clues. The surgeon came and determined that the surgery site looked fine. He maintained that it was probably a virus or something. All others were clueless and very concerned.
Saturday came bringing a rash! I knew what that meant without a doctor's help. He had roseola, a harmless childhood virus with seemingly alarming symptoms. That rash was beautiful to everyone! It was a wonderful answer to all our questions. Thank God for His mercy!
We took Jason home Sunday afternoon, ten days after surgery.
Sadly, the story doesn't end there. In some ways the end of it is the beginning of another. Since that ordeal Jason has been terrified of people other than those with whom he lives. He is tougher and less affectionate with his siblings. He has become a fearful child, coming near panic in unfamiliar circumstances. Already these things are less than what they were right after the hospital stay. Somehow, though, I think they will be a part of what he struggles with over the years. I think he will not be what he would have been if these events had not transpired. I am not being a doom sayer; he will likely be better for it - stronger and more compassionate. In some way, though, it hurts that mother's heart that hopes to rescue her little ones from all harm.
P.S. The pediatrician said he had never seen a surgery patient coincidentally get roseola at the same time. We both concluded that we would do the same thing all over again.
Sunday, May 18, 2008
Thursday, May 8, 2008
Nancy's birthday
Nancy had a great fourth birthday. John only worked a half day, so he was home about 9 AM. He took Nancy to the mall where they had her ears pierced. On the way home they took the money that Granddad and Grandma gave her and bought a new bicycle with training wheels.
Monday, May 5, 2008
My birthday
I have thought and thought about this post. I wish I could somehow just show you my thoughts and feelings surrounding my recent birthday. I am going to jot snippets here. Maybe that will create the picture of my mind.
I woke up that morning to Nancy vomiting just inside the bathroom door. (The bathroom is right outside our room, so it easily woke me.) Later Josiah vomited inside a different bathroom door, creating a hazmat area.
The doorbell rang at one point during the day. Nobody was there - just a box with "FLOWERS" on the side. It was for me. I opened it and cried at the sight of tulips before I knew who they were from. They were just an icon of home and the things I love - and miss - about the mid-west. Then I read the card. They were from my two adult daughters. I cried even more.
I slept on the couch that night because two sick children had fallen asleep in the living room. I had trouble falling asleep. I had a happy, satisfied yet mysteriously sad feeling. Tears came again.
The next day was errand day. When I got home I walked into my living room where I was assaulted by a Nerf dart. I looked and the perpetrator was my oldest son. He came 1800 miles for my birthday! Wow! What a feeling that was!! I was so touched, so glad to see him, so grateful, so proud, etc. I enjoyed him being here immensely. He made supper for us Saturday night, which was wonderful. He patiently worked at befriending Jason, who is rather terrified of unfamiliar people since his hospital stay. He preached a sermon the Sunday night he was here, bringing a similar feeling to the one the tulips brought. He's a good boy.
I think this birthday was maybe the weirdest, but best ever=)
I woke up that morning to Nancy vomiting just inside the bathroom door. (The bathroom is right outside our room, so it easily woke me.) Later Josiah vomited inside a different bathroom door, creating a hazmat area.
The doorbell rang at one point during the day. Nobody was there - just a box with "FLOWERS" on the side. It was for me. I opened it and cried at the sight of tulips before I knew who they were from. They were just an icon of home and the things I love - and miss - about the mid-west. Then I read the card. They were from my two adult daughters. I cried even more.
I slept on the couch that night because two sick children had fallen asleep in the living room. I had trouble falling asleep. I had a happy, satisfied yet mysteriously sad feeling. Tears came again.
The next day was errand day. When I got home I walked into my living room where I was assaulted by a Nerf dart. I looked and the perpetrator was my oldest son. He came 1800 miles for my birthday! Wow! What a feeling that was!! I was so touched, so glad to see him, so grateful, so proud, etc. I enjoyed him being here immensely. He made supper for us Saturday night, which was wonderful. He patiently worked at befriending Jason, who is rather terrified of unfamiliar people since his hospital stay. He preached a sermon the Sunday night he was here, bringing a similar feeling to the one the tulips brought. He's a good boy.
I think this birthday was maybe the weirdest, but best ever=)
Miscellaneous Jason pictures
Jason loves the organic suckers that I buy. However, they make him pretty sticky all over. This was the perfect solution. He loved the water, the drain and the sucker=)
This was actually taken in the hospital. I am putting it here because it is a frequent face of his. I think a combination of the change in dynamics in his oral anatomy and the sutures hanging from the roof of his mouth cause frequent, dramatic tongue antics.
The kitchen cabinets are a favorite. This exploration ended in climbing in!
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