Archive for June, 2009

Sunday June 28 Update on Charles

Sunday, June 28th, 2009

It has been a great weekend for us. Charles is doing very well. He is responding to the oral antibiotics (Clindamycin) that we are giving him, which are the same ones that he was getting in the iv at the hospital. It tastes pretty awful, so we have to hold Charles down and squirt it in his mouth. It’s a very small price to pay for a healthy kid.

Saturday (yesterday) went very well. Charles had the strength to play with his sister and run around a little. It did seem to tire him a bit more than normal, but that was to be expected. His temp was holding steady between 98 and 99.

Today, his eye is looking a lot better and he was running around and playing like a champ. He seems to be regaining his strength and coordination and certainly his sunny disposition. He doesn’t like to have his diaper changed because he thinks we are going to take his temp.

We had a follow up Dr. apt with Dr. Polin today and he was very positive about Charles’ recovery. Everything is on track and progressing normally.

Charles seems to be bouncing back. I hope this is the last of the updates I will have to do on this one. My work was VERY accommodating throughout this whole thing and for that I am incredibly grateful. I work with some awesome people and am looking forward to being back there tomorrow (as ironic as it sounds).

This whole thing has been a strange, almost surreal, experience for us. I remember as i was writing earlier posts thinking, “I can’t believe I am writing a post to the nogchog like this.” Through it, though, we have learned a few things that we will never forget. One of them is that we have friends and family that offered up an unbelievable amount of help and support. I did not have a chance to thank all of you personally yet, but hope to do so. You are all something else!

We are so happy that Charles is getting better. When you have children, you trade away your sanity for love and it’s the best deal you could ever make.

Friday June 26 Update on Charles

Friday, June 26th, 2009

Charles got his blood cultures back today and we are very relieved to find out that the infection is not in his blood. If it were in his bloodstream, it would be a pretty big and sad deal.

He continued to show a steady temp between 97 and 98 throughout the last night and today and the doctors felt pretty good about it and told us that one degree less than normal was not something that presented a serious concern.

He ate well today and drank pretty well, too. The docs are encouraging him to drink a lot since they removed the iv fluids. He has been pretty interested in food still and continued to eat like a champ during the day. He was not very sleepy last night and was awake a lot. Since he has been in the hospital, he hasn’t left his bed and it has really done a number on his sleep schedule. He did sleep well mid-day. His eye is also looking a lot better today.

The Docs said that we could take him home today after he started on the oral version of the antibiotics that he was getting through the IV. Right before lunch we gave him his dose and he didn’t want it, but we forced it down (it tastes bad) and gave him a juice box chaser which seemed to work. It was going well so they started preparing for his discharge.

He wasn’t really interacting again today and we thought that he may be just bummed to be in a scary, strange place where everyone has a mask and wants to jab you with something. So we thought that getting him some familiar toys might get a good reaction and i went down to the gift shop and got some small cars for him. It’s strange how some kids are pre-disposed to love cars and others could care less. Charles is definitely a car kid. After we gave them to him, something totally remarkable happened and he perked right up and was the happiest kid in the universe again for about 15 minutes. It was awesome and we caught some of it on video and pics (I think that the audio cuts out in the video, but it’s great anyway):

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I think that the one on the left is my new favorite pic of Charles.

Unfortunately it was short lived and our happy moment ended abruptly shortly after these were taken. We had just signed the discharge papers and were gathering our bags to walk out the door and Charles threw up all over himself and the bed. I don’t know another way to describe the feeling other than totally and utterly defeated. I think even Charles was feeling it. We were so bummed. I was thinking “here we go again”

A couple doctors came in to talk to us shortly afterward about our options and I wanted to get out of there and get him home. I thought that the comfort and familiarity would do him more good than logging time on all the monitors in his bed. Melinda agreed and we decided to take him home and so we did.

We picked up Norah at the Smyth/Peck residence where she had spent the last 2 days going to carnivals, swimming pools, and partying with her friends. She wasn’t as excited to see us as I had hoped. We gave her a cupcake and she walked to the car without resistance. She was clearly in her own world licking off the cupcake’s frosting in it’s entirety.

On that note, we can’t really describe what it feels like to have friends that will take your child in for a few days when the other is in the hospital. We are SO grateful. You guys are amazing.

We made it home around dinner time and everything went well. Charles is having a hard time walking and playing because he has been bed-ridden for so long and he is still pretty weak. His torticolis (asymmetrical neck muscle development) seems to be back a little. He was in physical therapy for that when he was younger and he is walking around with his head sort of tipped to his right. He has spent most of his time in bed in the past week with his right fingers in his mouth with his head turned as a comfort thing. He is wobbly when he walks and falls down, so we have to follow him around so he doesn’t get hurt. I don’t think that will have to go on for long and we are thrilled that he is interested in play.

He is in bed now and doing well. Kept his dinner down and was happy all night. We are hopeful that his throw up was an isolated incident today. He took his yucky medicine like a champ tonight and we will be administering it 3 times a day for the next 10 days. We have a follow up Dr. visit/checkin at Town and Country tomorrow. They are awesome for having weekend hours.

Thanks again to everyone’s support. We are hopeful that Charles is over the worst of it and glad things are starting to return to normal. BIG BIG thanks again to everyone.

Charles's Illness

Thursday, June 25th, 2009

Charles is currently in the hospital and getting IV antibiotic treatments for a serious (likely bacterial) infection somewhere in his little body. A lot of people have asked about what is going on and sent well wishes (thanks everyone, we all love you), so I thought I would detail out what has gone on with him in the past week. Melinda usually writes the posts here, but since she has been posting to facebook, I (Ryan) thought I would post to the nogchog. The following is a fairly detailed account of his illness for the past 9 days.

Wednesday June 17
I woke up Charles at his normal time. He felt hot so we checked his temp and it was 102.5. We gave him some motrin to get it down and he wanted to lay down. so i laid down with him and then passed him on to Mom while I got ready for work. A few minutes later, he started throwing up. He continued to vomit all over us (mostly Mom) and we put him back to bed.

He had been sick the week prior with a cold or flu bug and i was worried that it was turning into something more serious. I had heard that kids who die from influenza usually appear to get better, then get suddenly worse. We took him to Town and Country Pediatrics and saw Dr. Ray (who is great).

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She found acute otitis media (standard ear infection) in his right ear and said his left ear had some wax in it which she suggested treating with Debrox. When asked about the vomiting, Dr. Ray said that sometimes kids can throw up with an ear infection. She wrote us a prescription for Amoxicillin which we filled after the appointment.

When we got home, we gave him the antibiotics, some motrin to keep his 103 degree fever down and a little food and water. If i remember correctly, he threw up about an hour later. we were looking at the vomit on the couch and floor for pink to see if he threw up his amoxicillin which is a bright pink color. It looked pretty clear and watery, so we thought that he kept it down for the most part. That night he was cranky and drowsy, so we put him to bed and checked on him regularly.

Thursday June 18
Charles woke up and was pretty clingy. He threw up shortly after we gave him some motrin and was throwing up whenever we gave him food or water. His little spirit started to change and he seemed pretty down and out of it. I started to worry that there was something more wrong with him than just his ear (looking back, you could call it parent’s intuition or something like that). I have an otoscope here at home and looked into charle’s ears. The wax in his left ear made his eardrum look really dark and the paranoid parent in me thought he might have some head trauma from a fall earlier that week that caused bleeding behind the eardrum. Fully realizing that i am unqualified to diagnose inner ear conditions, I reached out to a good friend who is a Dr. and they assured me that the odds of that occurring are pretty slim.

Charles really wanted food and water, but we couldn’t really give it to him because he would instantly throw it back up. That was heartbreaking and he was really upset about it. At one point he snuck into the dishwasher when we weren’t looking and grabbed a cup out of it and started filling it up with water from the water cooler.

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He continued to throw up everything (food, water and medicine) and run a fever throughout the day. We got him some tylenol suppositories because he was throwing up his motrin. That was not fun at all. they looked like little white torpedoes. Suppositories were new to me. I have never had the pleasure before of having given or received one and the whole scene is something that i would rather forget. Torpedoes away and mission accomplished, though, and the tylenol did a good job of keeping his fever down. His temp was hovering between 99 and 102.5 most of the day.

Norah arrived home from a week stay at her grandparents (which she LOVED) and Charles was VERY excited to see her. He was smiling and laughing for a little while.

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Friday June 19
More of the same. His Amoxicillin prescription called for 6 ml twice a day and we started parsing out water (mixed with a little pedialyte), motrin, and amoxicillin in 1 ml. doses through a dropper at 15 minute intervals. He threw up less, but was still vomiting, lethargic, and spacey.

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Saturday June 20
Charles was still queasy. we continued to give him small doses of medicine and water. we were feeding him some banana and crackers. He continued to be lethargic and spacey and run a fever between 100 and 102. His left eyelid started to turn redish-pink on the surface and he was itching it and saying “eye”. Being totally frustrated I got online and started doing research on his condition – the fever, vomiting, ear, eye and everything.

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I called the Town and Country Pediatrics and asked to talk with a Dr. A nurse called us back a little while later. After explaining the situation, the nurse suggested that we take him to the ER at Children’s Memorial. I was a trip that I didn’t want to have to make. And i said to myself that if he threw up again, I would take him in. Three minutes later, he threw up. It looked like a lot and he had not had a lot to eat or drink that day to begin with. Mostly out of concern that he was not really getting any amoxicillin, we packed him up and I took him to the emergency room at Children’s Memorial Hospital.

The Docs there put him on an IV of fluids out of concern that he was getting dehydrated. They looked in his ears and said that his ear infection was looking good. They sent us home after answering a ton of questions from me. One of them was in regards to his eye which was still bothering him. The doc said that it was probably bacterial conjunctivitis which (as i understand it) is like pink eye and to watch for signs of a condition called periorbital or preseptal cellulitis. Signs included a spreading red patch of skin and swelling of the eyelid. We went home and went to bed. The Dr. said that if the fever goes longer than 5 days, bring him back in.

Sunday June 21
Charles continued to be feverish, lethargic, and spacey. We had sort of become house bound taking care of him and i was spending days in my pajamas. We continued to administer his medicine in small doses and he only threw up once on Sunday. Charles had several fairly wet diapers on sunday due to the fulids that he got at Children’s the night before which was good. He was not interested in eating or drinking at all and was really fussy when we made him drink in small amounts.

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His eye started to look worse. Although the redness didn’t spread out from the eye all that much, it did get redder and started to swell up. Charles clearly was bothered by it and was rubbing ad scratching it so much that it started to bleed a little in some spots.

Monday June 22
Charles woke up with a fever (which was now day 6) and we called Town and Country to get an appointment with a Dr. I wanted to see Ray again for continuity, but she was unavailable so we got one with Dr. Bergquist (who we had seen before and is also great).

I met melinda at the office for the appt. in the afternoon and Dr. Bergquist looked him over and said he had Periorbital Cellulitis and that the fever was still concerning. He had lost about 5% of his body weight at that point. She gave us a prescription for Omnicef which was a different antibiotic that would help his cellulitis. I had already read up on Periorbital and Orbital cellulitis on the web and knew a lot about it as Dr. Bergquist explained it. Periorbital Cellulitis is an infection of the skin on the outside of the eye and can be an indicator of a more serious infection going on. Periorbital Cellulitis can worsen into Orbital Cellulitis which is an infection of the eye muscles and tissues behind the eyeball and can be very serious.

We were instructed to start using the Omnicef for a few days and see if he got any better. When we got home, he took the Omnicef without a problem, but still showed little interest in eating or drinking. Sunday was the first day that he didn’t throw up and he managed to keep a little food and water and (thankfully) his antibiotics down.

A half hour after he had his first dose of Omnicef, he started working on his first poo in over 6 days. He poo’d a lot and Melinda and I were pretty relieved that his inner workings were moving again. He didn’t throw up at all on Monday and we felt like he was getting better.

Tuesday June 23
Charles woke up and was feverish, lethargic, and spacey still. His eye started looking better, and that was a good sign. Melinda and I were bummed because his personality had been gone since Thursday. His perpetual smile and cheerfulness had been missing for days and it was frustrating. Melinda and I found ourselves looking at photos of him when he was healthy reminding ourselves what our happy bear used to be like.

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We took his temp before bed which was 100 and gave him some motrin.

Wednesday June 24
At 2 am, Charles made a strange noise. He hadn’t said much of anything or cried out of the blue in several days. It was sort of a short, high pitched whimper from his crib. At first, i thought he was having a little dream and talking in his sleep, so I went in to check on him. When i looked in his crib, he was awake and looking up at me. I felt his forhead and was relieved to discover he wasn’t hot anymore. He wasn’t moving much and it was strange that he was on his back since he doesn’t sleep that way. I happened to feel his arm, mostly to nudge him a little to see how he would respond. His arm was cold, so i felt his other arm and it was cold. then i felt his legs and they were cold. I felt his forehead again and noted that it was kind of cold as well. I got our ear thermometer and took his temp. The first ear read 94.2 and i thought that I got a bad reading and took it again. It came out at 94.2 again. Then I checked the other ear and it read 94.0. He was limp and unresponsive (but awake and looking around). I ran to get Melinda and we got him up and out of bed to take his temp rectally to get a more accurate reading. A brief and awkward wrestling match yielded a rectal temp of 95.0 and the three of us remained fairly alarmed.

After a fruitless web search on what to do (i didn’t even know what to call this. it was like a reverse fever). The fact that i couldn’t find much on it was even more cause for alarm. I did find some info that was more alarmist than anything. Stuff like if your body temp drops too much, it can lead to hypothermia and organ failure. I called Town and Country’s answering service which referred me to call the Dr. on call, Dr. Polin, who is also a great doc that we also like a lot. I felt really bad that I was phoning him at 2:30 am, but the speed at which he answered the phone was staggering. His advice after our discussion was to take Charles back to the ER at Children’s and so we did.

I packed Charles up and we headed out. We got to the ER around 3 am and he was still lethargic and spacey. For the next 3 hours, we saw about 4 different docs (all of whom i had to explain the last week of his illness in detail). the nurses needed urine, blood, and snot and jabbed and poked tubes and needles in every one of his orifices to get it. Of concern to the docs was his low body temp, disinterest in looking around or making eye contact with people, and the previous week of infection.

At 6 am, they admitted him to the hospital and we went upstairs to our room. It is a special room and everyone in it is required to wear a sterile paper gown and a mask to cover the mouth and nose. Droplet isolation is what it is called, I think. They also informed me that kids under 10 were not allowed which is a bummer because his sister can always cheer him up. He was hooked up to a bunch of devices and monitors. They started IV antibiotics and fluids on him and I was told that most of the tests and cultures would take 48 hours. I was told that it was likely that he had an infection of a particularly bad or resistant strain of Bacteria and that the IV antibiotics would cover a wide range of infection while we waited for the tests to come back. I guess people’s bodies can react differently to infection and in some bad cases, the body actually drops the temp instead of fever so they started to take his temp rectally at regular intervals.

The staff at Children’s was and is great. They are a very well run operation from the patient side. There is a chair in his room that folds out into a bed and Charles and I tried to sleep around 6:30. There were so many machines and monitors that he was hooked up to that kept going off. It was like trying to sleep in a room full of alarm clocks and people with masks on who would make a brief appearance and then leave. It was all sort of surreal – especially in a sleep deprived state. At some point Dr. Ray visited us on her rounds with a good report from his early lab results that his white cell count was looking good.

At 9:30am I started making phone calls to work and family and for the most part left hazy rambling messages on coworkers answering machines.

By 11:00am Charles’ temp had gone up a little to about 97 which was a really good sign. Melinda and Norah showed up a little later. When Charles saw Norah through the glass, she was waving emphatically at him and Charles remarkably waved back at her. It was the most that he had responded to anything in the previous 5 days. Melinda’s aunt Nancy came to visit (which was great, thanks) and I dropped Norah off at our friends (thanks Sean, Michelle, and Jeanne!!!!!!!!!!!!!!) who have kids that Norah LOVES to hang out with. It is a huge help since Norah isn’t really allowed in the hospital room and we owe them an enormous debt of gratitude.

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In the afternoon, Charles condition remained steady. His temp stayed around 97-98. He was still drowsy and unresponsive. He finally seemed interested in food and ate really well.

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Thursday June 25 (today)
Docs were in (including Dr. Polin which was nice) and out of the room in the morning. Charles continued to hover around 97-98 degrees. He ate well at lunch. Norah went back to Sean, Michelle, and Jeanne’s house to spend the day (and a sleepover) there which, again, is such a big help, thanks!

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Charles was drowsy all day. This afternoon, the docs decided to stop the iv fluids to get him to start drinking more on his own. A half hour later, he started to perk up for a moment. Mom held him up to the window and he said “car” with some previously unseen enthusiasm. He started looking through a people magazine with Melinda and was talking and smiling. First smile in a week. It was really great to see a little bit of his personality that had been completely missing for a week.

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So that is where we are right now. Melinda and I are at the hospital. Norah is with her friends tonight and Charles continues to show small signs of improvement. The nurse just took his temp and he is at 98.3 which is great. Tomorrow, we should have some results from the cultures and are hopeful that they will give us a more accurate picture of what he is fighting.

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I would like to extend a huge thanks to everyone who has reached out with well wishes and offered help. We are surrounded by the most incredible friends and family and are so grateful to have you in our lives.