Health update

Mr. Bishop waiting for Maryam to drop some of her "blue cookie".

Yellow teeth from the cream of the cookie. It took her a minute to figure out that its the same type of cookie, it just has yellow cream instead of white.

Mr. Bishop checking to see if there is any residual cookie hanging off of her.

I KNOW, I've been a VERY bad blogger lately, my apologies. When I last updated the blog I wrote about Maryam's ear infection and her up coming Synagis shot. The GREAT news is that Maryam had her last Synagis shot! Hooray!!!! The bad news is, we had to take her back to the pediatrician's office yesterday because she had a fever again. Monday afternoon she was really hot, when I took her temp it was 103.3. Of course Monday night she didn't sleep and kept getting hotter and hotter. Through out the night I couldn't keep her fever below 102.7, it was awful. So, Tuesday morning we took her back in to see Dr. Mohan. Dr. Mohan thinks that Maryam should continue with more antibiotics. So, right now we're on her second round of antibiotics for the same ear infection. If this round doesn't work she's going to give Maryam antibiotic injections.
She doesn't want to give Maryam tubes yet because of Maryam's respiratory history. She fears that if something were to go wrong in the "simple procedure" that she'll need to be intubated. IF that were to happen her throat would still be soar for her trip to CHOC in May and probably wouldn't even be able to go. So, Brett and I decided to follow what Maryam's team of doctors suggest and wait on tubes until after May. Hopefully by then, with spring in full swing, she won't be getting any more ear infections!

Rotovirus (insert sigh here)

Here is Daddy sleeping next to Maryam on Wednesday morning when she woke up at 5am not feeling well. He rocked her for a while, then laid her down in her bed. He proceeded to pat her butt and rub her back until she fell asleep. Looks like he got a little nap in there too!
We had to take Maryam back in to the doctor today because she's on her 6th day of diarrhea. Her doctor said that her symptoms sound like Rotovirus, which is unfortunately VERY contagious. HOPEFULLY Ian and Anna didn't catch it from her on Tuesday night. Dr. Mohan told us to keep giving her the Pedialyte through today and start her on half formula/half Pedialyte tomorrow and see how she does. We can't let her lose too much weight, and we don't want her to get dehydrated. The next few days is going to be trying to find a good balance for her tummy. Wish us luck!

I added this picture because she just looks SO grown-up! I can't get over how much my little girl has grown in the past two years.

Back from the doc...

So, we took Maryam in to see a doctor today. I told him about how she is pulling on her ears and complaining they hurt. And I told him about her diarrhea that she had all day Sunday and the fever that has been coming and going since last week. He said that her lungs sound great, so its probably not respiratory. He thinks she has a viral infection somewhere in her tummy. Sort of like a "tummy flu". The complaint about her button could have been her complaining about her tummy and her complaint about her ears hurting could have been caused by the fact that she has been pulling on her ears. Either way, both ears look great and her lungs sound crystal clear.
He suggested keeping up the Tylenol until the fever is gone. If she isn't feeling better by next week or if she gets worse, we're supposed to bring her back.

Happy St. Patrick's Day!

To the doc....

The last couple of days Maryam has been fighting a fever. Then she told us that her ear hurts and her button hurts. IF either are infected, I hope that one antibiotic can kill both infections. The stoma looks fine, but last night when I plugged her G-tube in to give her Tylenol for her fever she SCREAMED out in pain. Not just whined that it bugged her (which she rarely does) but yelled out. It was pretty heart breaking. So, this morning I called and got her in to see her "back-up" pediatrician since her regular one is off today. The only appointment slot they had available was at the same time as her PT for today. So, I guess we'll have to reschedule that too.
Wish us luck.

Ulcer? Really?

So, on Friday morning I called Maryam's GI doc to find out if we could bring her in for examination. Her button was hurting her even more than it had been. His day was already over booked so he couldn't see her. But he was very concerned that Maryam was in pain so he suggested that we take her in to see her pediatrician. His plan was to have the pediatrician examine her and call him. When we got to Dr. Mohan's office she wanted us to take the button out to see how it looked. This process is USUALLY nothing, Maryam doesn't pay attention, it takes only a few seconds to deflate the balloon and pop the button out. However Friday, the minute I put the syringe in the valve to deflate the balloon, Maryam started bawling. She was trying to defend her tummy, she cried and she tried to squirm out of my arms. She was VERY upset. Dr. Mohan was shocked by this and noted that Maryam has never reacted this way to her button. While the button was out we fiddled with her stoma and that caused her to cry even more. We were trying to figure out where the source of the pain was coming from.
We put the button back in and Dr. Mohan went to call Maryam's pediatric GI doc. When she came back she told us that they recommend that we head to the ER. That they want to "rule out anything surgical". I kid you not, just by hearing those 4 words my head started to spin. The last thing Maryam needs is another freakin' surgery! Well Brett and I wanted to avoid having to take her to the ER so we were brainstorming to see if there was anything else we could do.
We took the button out again so Dr. Mohan could culture it for infection and again Maryam started bawling. I asked her if this was your kid, what would you do? And she said she'd take her to the ER. So, off to the ER we went. I get why they wanted us to go, it just sucked, ya know?
We got to the ER over an hour later and we were seen right away. They did some blood work to rule out an abscess or any other infection. That was not pleasant. Maryam screamed as soon as she saw the syringes.....great, she's learned. She had a few x-rays of her tummy to see if maybe the button was placed wrong, or see if they could see anything on the inside near the button.
The ER doc called up to Maryam's GI doc after all the tests were done and they determined that Maryam has an ulcer in her stomach near where the Mic-key button goes in. She was prescribed a medication to take 3 times/day for over 30 days. It has to be taken at least 1 hour before eating or 2 to 3 hours after eating.
She's not better yet. Her retching is out of control. She woke herself up from her nap yesterday with all of her retching. She's still very sensitive and defensive of her button. She touches it and points at it and says "booboo owie". I haven't noticed that weird smell coming out of her tummy, which is good, but we did see dried up blood Saturday night when we took her clothes off to give her a bath.
Hopefully this medication does the trick. G-tubes suck.

Update

The good news is Maryam still has no idea that she's sick. Apparently we were able to get the antibiotics into her system before her ears and chest notified the rest of her body that they're infected. She had a fever last night, but only for a half hour.
Today Maryam's pediatrician called to let us know that the radiologist did see pneumonia in the x-ray, but the antibiotics she prescribed for her ears will help get rid of the pneumonia as well. She also told us that the radiologist saw signs of asthma. We're not overly surprised by this. Apparently babies with Chronic Lung Disease more often than not develop asthma. With Brett's history of asthma, Maryam didn't stand a chance of not getting it!
Maryam's pediatrician doesn't want to label her as an asthmatic yet though. She wants to wait for Maryam's next cold to see if it affects her similarly. Plus, the treatment her pulmonologist assigned to manage Maryam's Chronic Lung Disease was designed to treat asthma too, just in case. So, nothing would change as far as medications go if she were to get an official diagnosis.
Oh more good news....the medicine is working really well. Maryam hasn't coughed since this morning! I'm guessing that means that her lung has already started fixing itself. Maryam has always responded well to steroids, she's been on them since before she was born. (Maybe that's why she's harrier than a monkey!)

Thanks Christi!

Christi Carnes, the digital scrapbooker extraordinaire, has mastered the use of html code to make Maryam's blog super fantastic! Kudos Mrs. Carnes, Kudos. My favorite part is what she said, "it was nothing, it only took 30 minutes!" Gotta love her. To see what she did with her own blog check out Christi's Blog.
Maryam still isn't feeling too hot. She was up for 3 hours last night mostly due to discomfort from the diaper rash. I think I've finally got that under control. Now, if only I could stop the diarrhea. My new game plan is to give her Pedialite until there is no more diarrhea between feedings. If 4 hours passes without her having more diarrhea, I'll try to put her back on the Pediasure. Wish us luck!
Maryam had PT today and I think it went well. My little sensory kid strikes again. We think the toe walking might be from not liking the tile floors. We don't have any carpet, we have tile in the living spaces and hardwood in the bedrooms. When she's on carpet she tends to walk normally ie, at PT. So, my new plan for the toe walking is to keep her in shoes for a few days and see if she stops toe walking. If that works then I guess she'll have to wear shoes at home or at the very least slip around in socks.

And the winners are....

Emily (Dakota's Mommy), Auntie Brande and Yaya. Great guesses ladies! Maryam has a viral infection called Herpangina. Its a form of the virus that causes hand-foot-mouth disease. Now tell me, how does a baby that rarely puts anything in her mouth contract such a thing? According to the doctor the sores in her mouth are painful and we are to keep her on Tylenol or Motrin until the sores go away. And on top of that, Maryam also has ear infections! She was given Amoxacillan, 6mls 2 times a day for 10 days. Poor little punkin.

Oh and she hasn't stopped hurting herself. She keeps putting her hands in her mouth and hurting herself. And the sores are on her tongue, on her lip between her bottom lip and her gums and on the back of her throat. She has one on the outside of her top lip which looks like a zit and another sore on her chin. Its crazy! It just came out of no where. Apparently it will clear up in a few days. The doctor said that her fever could be from either the virus or the ear infection. Either way it should be gone in a few days.

The bummer, no trip to Disneyland with Auntie Katie. The good news, Maryam is in the 45% in both height and weight for her ACTUAL age! HOORAY!!!!! She's up to 22lbs 9.6ozs and is 30 3/4 inches tall!

Hopefully Maryam will sleep tonight. Now that we are aware of how much pain she has been in, we decided to set alarms so that we can wake up before she does to administer her pain meds.

To the doctor we go....

Maryam was running a fever all day yesterday and for parts of the day on Sunday. So, last night when she was up from 2am to 8am and still running a fever, we decided that she would see a doctor today. Sadly her doc is too busy today, so she shall see another one. I'm worried because I thought it was teething, but her fever is getting higher. AND, she has sores in her mouth. I remember her falling the other day, and she may have bit her tongue, but sores in her mouth and a fever, I just want her checked out to be sure.
My dad had strep last week. I'd hate for her to have gotten that.
I'll update later.

Sicky Baby

We've been fighting off fever ALL day! The last time we checked it Maryam's temp was 103.5. She's been breathing rather fast, around 60 breaths per minute, but I think that's partially from the fever. I say partially because she did have some wheezing today so we had to give her a few Albuterol treatments. We will continue to monitor her through the night and if her temp goes over 104 and we can't stop her from crying, then we'll be taking her into the ER.
Maryam was up from 3:09am until after 7:30am, it was a rough night for all of us. She did manage to take a 3 hour nap this afternoon. We just hope that she's feeling better for her baptism tomorrow. I'd hate for her not to be able to come to her own party. That's just sad.

Fevers and sleepless nights

So, Maryam woke up at 4:19am and didn't get back to sleep until nearly 7:30. That sucked. Poor little punkin just isn't feeling well. I thought she was a little warm last night when we got home, I took her temp at it was 100.7. I figured, low grade, its probably just more teething yuckyness. However last night was different. She didn't wake up ready to have a party in da crib, she was crying. And it was one of those sad mournful cries that comes with big crocodile tears that breaks Mommy's heart. After about 3 hours of rocking and trying the whole CIO thing ( I SUCK AT THAT!) I finally managed to rock her back to sleep! My back is killing me because she wouldn't let me sit. That's when I knew she really wasn't feeling well.
But when she woke up at 9:30 she wasn't hot, or cranky or sad, she was back to being her happy self....my weirdo baby strikes again. So, we proceeded with our day as normal. We went to PT and she was fine! THEN, as PT was ending she got hot and cranky again. By the time we got home from PT her fever was up to 102 and we were starting her Motrin/Tylenol regimen again. I can tell she's feeling a bit dehydrated because she's drinking from Honey Bear pretty good today. So, I'm giving her extra water via G-tube after each meal and presenting Honey Bear cup every 15 to 20 minutes.
Deep down I think its just the yucky teething because she's acting normal, she isn't coughing, sneezing or having a runny nose. She hasn't touched or pulled on her ears and she isn't retching any more than normal.
But PT was GREAT today! She crawled across the play room while her PT criticized her every move, I love that. I find it fascinating how what I "misconstrued" as uncoordinated is "tucking her left knee and hyper extending her right hip." Its amazing what her PT sees that I don't! Am I crazy or do all babies start out crawling funny? At the end of the session the PT did say, "Well, she did just start crawling." I KNOW THAT! Does she?

"I think its viral"

That is what Maryam's pediatrician said, "I think its viral." Maryam's lungs sound clear, her ears look great and her fever went down today. Her low low grade fever is still totally dependent on Tylenol and Motrin every 3 hours, but hey, at least its not 104 degrees anymore! I'm supposed to watch her and keep her home. Her doctor wants us to stop all therapy sessions outside of the home for 2 months. That's going to be hard! She REALLY needs feeding therapy because she is still 100% tube fed and seems to be getting better with what little therapy she has. And I hate to stop PT now that she's actually trying to move around. But her doctor seems to think that she keeps getting sick from going to doctor appointments with specialists and going to therapy 4 times a week.

The top photo is of Maryam in her new car seat. When I see her in it I can see how she really was too big for her old one! The weight limit on the old seat is 22lbs. She's currently 20lbs. 10ozs. The height limit on the old one is 29" she's currently 28 3/4". So, it was definitely time for a new one! We decided on the Britax Marathon because she can still sit rear facing up to 33lbs! I LOVE that idea. And then she can sit forward facing up to 65lbs as long as she doesn't grow too tall. We got the "Couture" version because its Maryam's car seat and it just has to be pink! And this was the only pink one that we liked.
The second photo is Maryam in Daddy's suitcase. She was trying to tell him that she wants to go with him on his business trip. You can see that she's still a little pale, but she seems to be feeling better. We've been giving her all of the normal feedings except when her fever spikes. When her temp goes up we give her Pedialite because that's what the pediatrician told us to do.
She's already asleep for the night, but the past two nights she has woken up every 2 1/2 hours for snuggles, comfort and a good cry. And of course those wake ups coincide with needing either Tylenol or Motrin within the half hour. Thanks for all the prayers and well wishes.

To go or not to go, that is the question

I guess we decided against going to the ER for now. We're just going to monitor her from home and if we absolutely have to expose her to the ER then we will. Other wise we're just going to go see her doctor tomorrow.

Officially sick

So, Maryam's fever went up to 104.3. SCARY. I've been giving her Tylenol and Motrin every 3 hours like I was told by her pediatrician the last time she got sick. Finally I resorted to a cold compress and a warm bath. That appears to have helped some. Last we checked her temp was down to 102.9.
But the advice nurse wants us to take her to ER. So, off to the ER we go.

Friday, Saturday & Sunday

In spite of having such a long week full of doctor appointments and therapy sessions, Maryam has a fantastic Friday! She woke up pleasant and stayed pleasant all day. Not that she's not usually pleasant, because she is, she's a very pleasant baby. But I thought she'd be a cranky pants from having to do so much traveling this week. She proved me wrong! She spent all day playing! Here she is playing the piano with her Yaya.

We went for a 2 mile walk on Friday and she loved it. She was practically hanging out of her stroller trying to pet Mr. Bishop. Then she'd sort of lean back to one side and prop her legs up, I wish I had brought the camera with me.

Here is Maryam taking a nap while being fed. She didn't get out of eating that easily though! When she woke up, she went straight into her high chair!
On Saturday Maryam went to Brett's parent's house for the day because we headed out of town to pick-up Brett's new hunting shotgun. Since its still RSV, cold & flu season Maryam didn't go with us. I CANNOT wait for April! But when we got home last night Momom and Popop told us that Maryam had started getting hot. So, I gave her some Motrin and when we got home I checked her temp and it was 102.5. Dang it! Sick again. Through out the night Maryam woke up every 2 1/2 hours crying and wanting to be held. She's back on a regiment of Tylenol and Motrin and I scheduled a doctor appointment for tomorrow at noon. Wish us luck that its nothing. The fact that she started coughing again makes me a little nervous that the pneumonia never fully went away.

This is Maryam today napping. Poor punkin is just so tired from being sick and not sleeping. If I've said once, I've said it a million times, the girl can't catch a break, but she seems to catch everything else.

First 24 hours down....

Well, today went better than I thought it was going to go. Maryam is handling her antibiotic well, she didn't get any side affects or have an allergic reaction. She started playing more this afternoon, but as the evening drew nearer she started getting cranky and hot again. She didn't nap much today. She had a 10 minute nap around 1pm and another 20 minute nap after 5pm. But around 7:30 or so, she started getting hot again and consequently whiney. It just seems like she can't get comfortable. Both Brett and I have tried rocking her to sleep, but she doesn't seem to either want to go to sleep, or just can't because she's so uncomfortable.
Her doc told us to keep her in a onsie and if she gets cold put some socks and light pants on her. We don't have onsies though because we can't access her button through a onsie. I looked in one of the bags from her baby shower (which was in April 2007) and I found 5 9 month onsies. So, now I've got something to work with. She keeps trying to pull it off though. She's so funny like that. Maybe because she's use to wearing two piece clothes, I don't know.
She tried helping with her Albuterol treatment again. She does the strangest things, she actually tried putting the tube attached to the nebulizer in her mouth. She rarely puts anything in her mouth, so why this? I wonder if I can make her formula into a vapor and have her inhale her food! JUST KIDDING. Inhaling her food is exactly why she had the fundo and g-tube placed in the first place.

Feeling Better!

Here is Maryam helping with her Albuterol treatment. We had to increase her treatments up to 3 times per day until the pneumonia is gone.

Maryam playing with her piano. We have a little Schroeder in our mix.

She is still looking a little peeked but she's feeling MUCH better. Sure hope she gets her color back soon though!

Maryam's doctor's nurse just called and let us know that Maryam tested negative for RSV. Hooray! Maryam's fever is under control. The highest its been today is 100 degrees. She's back to playing and "motor boating" again. Nurse Sherri told me that Maryam's pneumonia is in both the upper and lower departments of her right lung. But she was really happy to hear that the antibiotics are working so well. Sherri felt so bad for us yesterday. Maryam's fever was so high that her whole body was red. We could feel the heat radiating off of her from a few feet away. Poor little baby.
Today she's still really weak. She won't spend much time on her tummy at all and she's having a hard time staying seated for long periods of time. But I just can't get her to nap! She slept for 10 minutes after 1pm today, but c'mon! She's sick, shouldn't she want to sleep a lot? Another thing I noticed is that she's still breathing kind of hard and fast. But hopefully the extra breathing treatments will help all that. Thanks for all the thoughts and prayers! They always work.

Sleepless night

It seems that alternating between Tylenol and Motrin is helping keep Maryam's fever down. I'm so glad her pediatrician suggested that. I told her that the Tylenol was only working for about 2 hours if it was working at all, when she suggested alternating between Tylenol and Motrin every 3 hours.
Her doc called us back last night to check on Maryam. She told us that Maryam could have picked up the bug anywhere. That because of her medical history and her respiratory system it just settled in her lungs. She suggested I bring her back in on Thursday if Maryam doesn't show any signs of improvement.
Last night was sleepless. Aside from worrying about her heavy, fast breathing we had alarms going off every 3 hours to give her the meds. And she wanted to be held about every 2 hours. So, I'd hold her until she went back to sleep and then lay her back down in her bed for another few hours. But we all know how babies are when they're not feeling well, they just want to be held. Can you blame her though?
But props to all you moms out there that don't have the luxury of a baby that sleeps all through the night and has since she came home from the hospital. It's EXHAUSTING!
Oh and say a prayer for my friend Jennifer's daughter Hannah, she has RSV. Poor little punkin.

Pneumonia :(

Maryam and Elmo....love, love, love.

A Doggie/Baby stare down.

Great Grams and Baby love.

All these photos were taken yesterday, before Maryam got sick. Well, really I don't know about that. My gut feeling is that Maryam never got better from her last infection. A few weeks ago we took Maryam to the doctor because she was coughing and had a fever. Her doctor said it was an ear infection, gave us some anti-biotics and sent us on our merry way. She also told us that Maryam's fever would break with in 24 hours of getting the drugs. Maryam's fever didn't break until closer to 48 hours and the ear infection didn't explain the cough. When I asked about it her doc said that it could just be her retching, it's hard to tell the difference.
Well, there is a noticable difference this time! And I'm pretty sure pneumonia doesn't appear out of the blue. Maryam was given a stronger anti-biotic this time and a chest x-ray. The x-ray shows pneumonia in her right side lung. What a bummer. Her doc did the x-ray just to be "safe" when she didn't hear anything in her lungs. Thank God she did though! Or it could have gone untreated. She also did a RSV swab on poor Maryam. That is one of the most invasive tests I've ever seen! I'm so glad I never saw them do it in the NICU or I would have probably been sick. (There was an RSV break-out in our NICU while we were there, she didn't catch it.) So, now we wait. Pray that she has a speedy recovery and no hospitalizations!

Doc apts.

When I called this morning the soonest Maryam could get in to see her pediatrician was 5:00pm. Once the pediatric advice nurse phoned us back, she moved the apt up to 1:30pm. We had to cancel OT for today, always a bummer. We're giving Maryam Tylenol every four hours and after about an hour she starts feeling better. I haven't checked her temp again since this morning, but she is definitely hot to the touch. Poor little punkin can't catch a break.
I'm starting to wonder if its more than an ear infection though. She's been retching ever since her feeding this morning. And we fed her at 8am. So, that's cause for concern. Her O2 level is still at 1/4 liter because she's still breathing hard. I'll let you know what the doc says.