Thursday, January 31, 2008

We're Home!!

Benson stayed off his oxygen all night long without desaturating so today, we got to come home! It feels so good to be home!!!

He will have to continue doing breathing treatments at home, and the x-ray yesterday showed that his lung had not filled back up with air yet, but as long as his body is compensating for it, the doctor feels that it will open on it's own in due time.

Thank you for all of your prayers. The Lord sure has been faithful to us!

Tuesday, January 29, 2008

Day Eight in the Hospital

Benson's cough is much better today. He has hardly coughed at all, really! We tried leaving him off of the oxygen again last night, but had to put him on it again at 3:00am because his levels dipped low again. We took a chest x-ray yesterday that looked basically the same as the day before. The doctor said that he still saw the affected area, but in his opinion, it looked better. We will take another x-ray tomorrow.

They are saying that we are better, but not where they want us to be and where they want us to be depends on Benson's body's ability to break down the mucous in his lungs. After considering the risks, the doctors have decided that we will not do the bronchoscopy (the procedure where they go into his lungs and remove the mucous and re-inflate his lungs.) It may take a while, but we are going to wait on his body to break it down on its own.

We will be able to go home when he can be off of oxygen day and night and not desaturate (have his oxygen levels dip low.)

He is still happy and sweet as can be... His two little teeth are really peeking through now and yesterday he was biting my finger and gave me tooth marks for the first time! Those little boogers are sharp!

Thank you so much for your prayers and your encouragement! It has meant the world to us! Please continue to pray for endurance and strength and patience for us as we wait for healing for his little body.


It's hard to tell this little guy is sick:
video

Benson is looking more like his daddy every day!



This is how he sleeps now... when we get home, we're going to have a real challenge to break him of this!



This is Benson on his "field trip" to the window with Grandmama. We are stuck in our room since RSV is so contagious, so since they took him off of the oxygen during the day today, Mrs. Lula showed him all the cars and trucks outside his window. He can't see out of his window from his crib, so he was fascinated!


Benson's Great Grannie Hite came to visit him. She's got on a mask to keep his germs from her and hers from him! Good thinking, Grannie!


Here are a few pictures that Aunt Missy sent that she took when she was here:




She wanted to get one that showed that he actually does cry sometimes...


Aw.....

Sunday, January 27, 2008

Please Pray

Last night, we tried taking Benson off of the oxygen when he went to sleep. His O2 levels dipped down into the low 80's, even with 1 liter of oxygen, when he was laying flat. We put him on an incline and increased his oxygen to 1/2 a liter and his numbers bumped up to the upper 90's.

The doctor came in this morning at 6:00 and listened to Benson's lungs and said they sounded clear. He was encouraged to see that he seems very happy and sounded great, but he was puzzled at the fact that Benson was still requiring so much oxygen. He ordered some more blood work and another chest x-ray.

The x-ray showed that he has a collapsed lobe on the left side of his lungs. The doctor said that this is due to a mucous plug that has built up in his airway blocking the air from getting to that lobe. This explains why even though he sounds good in his lungs, his oxygen levels are still low... his lungs aren't working at full capacity.

They are giving him a medicine to break up the mucous in his lungs. It is the same medicine that they give to children with cystic fibrosis to help them breathe better. The doctor is hoping that the mucous will break up on its own and he will be able to cough it up on his own. If that doesn't happen by Wednesday, the doctor will have to do very risky surgery where he will actually put Benson to sleep and go down his throat, into his lungs and suck the mucous out and manually re-inflate his lungs. With Benson being so small, the doctor is using this as a last resort option, but he's giving it three days to clear up on its own, otherwise he will be forced to do the surgery.

Please pray hard that this mucous plug will dislodge on its own and that we will not have to do surgery. Thank you for your prayers! I never thought I'd be coveting prayers for snot!! We appreciate them so much.


Aunt Becca and Ron came to play

Eating Aunt B's nose

Great Aunt Missy brought a present! Benson was so pumped! He loved opening the tissue paper part of the present!

A vibrating teething ring! Thanks, Great Aunt Missy! Note the puzzled look on his face, he's still a little amazed by it...

Trying really hard to EAT the balloons that "Aunt Kathy" and "Grandma" Storey sent him.

Saturday, January 26, 2008

Day Six in the hospital

We have had a good day today... I would say that Benson is about the same as he was yesterday and he was better yesterday, so that is good news. They have decreased his oxygen to 1/4 a liter and are hoping to have him off of it tomorrow while he is awake and on it only when he sleeps. The next step will be to be off of it completely to see how that goes. He still has some wheezing and a little "crackle" when they listen with the stethoscope, so we're still doing the breathing treatments every three hours.

Hannah was discharged from the hospital today at 3:30. They sent her home with breathing treatments that she will continue to have for 6-7 days. She never had to have an IV or antibiotics or oxygen or any of that yucky stuff, so for that we are grateful! She does still feel very crummy though. He throat is still very red and scratchy and when she sneezes and coughs it upsets her greatly, also making it tough for her to sleep. So, please continue to pray for healing for her.

On the other hand, I think Benson is the happiest sick baby that there ever has been. All of the nurses walk in and say, "He sure doesn't look sick!" And then he lets out one of his hacking coughs and they say, "well, maybe he still is..." You definitely can't tell he's as sick of a baby as he is just by looking at him, that's for sure!

We appreciate all of your prayers so much. It is such a blessing to be part of the body of believers during times like these!

Friday, January 25, 2008

Day Five in the Hospital and a Prayer Request

Improvements!!
We have had some big improvements today for the first time. The doctor is pleased with Benson's progress and we can tell he is feeling much better. We still have no indication of how much longer we will be here- we had a scare in the night that tells us at least a little longer...

After his midnight breathing treatment, his O2 levels were sagging down into the mid to low 80's... 93 is the lowest they are supposed to be... and normally after his breathing treatments he has his highest oxygen levels, so to see them so low concerned us greatly. Finally I asked Benjamin to check the meter to see how much they were giving him and it turns out they had forgotten to turn it back on after they finished his treatment! We were so glad THAT was the cause, but it also lets us know that he still needs the oxygen. They are going to start weening him off of the oxygen tomorrow and see how it goes.

He still has some slight wheezing and a yucky sounding cough, but the doctor says that his lungs sound much clearer than they have up to this point. We are so thankful!!

Prayer Request
I do have a prayer request:
As much as we germ-x-ed and clorox wiped and were so carefull not to let them play with the same toys or have any cross-contamination, Hannah, Benson's cousin, who is four weeks older than he is (she will be nine months on February 9th), who was in the mountains with us this past weekend, has tested positive for RSV and has been admitted to Mary Black Hospital in Spartanburg. They have given her two breathing treatments that have seemed to really help. They have not had to do an IV yet and her oxygen looks good, so they haven't had to attach any wires to her and for that we are so thankful because she is ALL OVER the place. She's crawling and pulling up on everything, so to be tethered to machines would be quite difficult for both her and her parents.

Susie, Hannah's mama is five months pregnant. We found out yesterday that they're having a girl!! Please pray that Susie will be able to get rest and have endurance and strength to get through this time. And that the little one growing in her belly will be safe and sound even though this is a stressful situation for the family. They are giving Hannah treatments every four hours, so rest will be intermittent, but pray that the Lord will multiply the rest she is able to get...

Thomas, Hannah's daddy is the coach for Dorman High School's basketball team. He has a ball game tonight and has to be away from them, which I am sure is tough. Mrs. Lula has gone to stay the night to help out since she has very recently seen how this virus progresses.

We are hoping that Hannah does not have as serious of a case as Benson. Hopefully the breathing treatments will do the trick and they won't have to do all of the other stuff. The doctor did say, like ours did, to expect it to get worse before it gets better. We are hoping it doesn't get too much worse. They said her little throat is so red from coughing so much, they actually tested her for strep, but it was negative. Please pray that her tiny little body will bounce back quickly!

Hannah is teaching Benson how to stand up without holding onto anything

SO adorable!

Notice Will is missing... Christa and Jason had a wedding to go to so they weren't at the Mountains, now they are SO thankful!!

I think this cutie looks like the little boy off of that movie "A Christmas Story" She was so bundled up!! :) What a baby doll!

So Doc, When Can We Go Home?
As far as going home, the doctor said, "I'm not saying that you need to bring your Easter basket, but you're going to be here a while..." We've pretty much set up house here. We've brought his exersaucer and his jumparoo, his play gym and all his toys. I've got all of my "special" foods in the nurses station refrigerator and I'm thankful for the wireless internet (it's been down all day yesterday and today, that's why this post is so late in coming...)

Mrs. Lula, Mrs. J and Aunt Ash have taken turns staying the night so that Benjamin can go home and get some rest. Since I'm nursing Benson, there's no rest for the weary here, but the Lord has certainly sustained me and I am able to rest when he does for the most part.

On Being a Stay at Home Mama
On another note, I would just like to say how glad I am to be a stay-at-home mama. I can't imagine having to leave Benson each day with him here all hooked up to machines and getting these breathing treatments. I really feel like being a mother is the highest calling and I feel so blessed to be investing in my son's life each day. I love teaching, but there are plenty of people who can teach the children, but there is only one person who can be Benson's mama and I am so thankful not to miss a minute of it. I feel like, in this time, the importance of me staying home with Benson has been magnified and that the Lord has blessed us even during this hard time through our being obedient to his calling me home. I am thankful to have a strong husband who made the decision for me, even when I wanted to finagle my way back into teaching. It has been the best decision for us and one that I know I will always look back on and never regret. And, even though we don't always see how, we know that the Lord will work out all the details and supply every need. He is Faithful!

Think about it some more:
Here is a thought-provoking post about being a stay at home mom from BiblicalWomanhood.com, Read it and leave a comment to let me know what you think! :)
There is no greater work

Here's a little video of Benson enjoying his jumperoo that Hannah let him borrow. Thanks, Hannah! :)
video


Nana and Papa came to see the boy. He was so excited to see them!



This is Benson being weighed this morning. From this angle he looks like a gigantic baby! But he's only 16 lbs 7.1 oz. 25th percentile!



He was so excited to be naked for a minute after his weigh-in! The antibiotics they are giving him have given him the worst diaper rash! Since we mostly use cloth, we haven't had to deal with diaper rash and he is NOT a fan!



Here he is playing so sweetly in his crib.



Standing up like a big boy!



Slobbery kisses for mama... I'm sure if they tested me, I'd be RSV positive! :) It's worth it for kisses like these :)



We have the deluxe suite here at the hospital! It is ginormous! I'm not a light packer, so it's a real blessing!



Nana, also RSV positive and lovin' it!



Noah Wyle from the show ER is our Respiratory therapist! Ok, so not really, but he sure does look like him!! You can see him patting Benson's back here during one of his breathing treatments.



Sweet boy is getting used to his treatments and doesn't really mind them at all.. except for the nose suctioning out part.



Breathing treatment time



Playing in the humongous crib with Nana



This is Benson's nurse, Adrin. They're pals.

Random Adorable Pictures that I didn't get a chance to post before we were in the hospital:

Benson in his Jumper.. one happy boy!



Benson with his girlfriend, Layne... He loves her!



Chillin with Layne



This was Benson's attempt at eating a banana in his little banana eater thingy. Note all the banana that is on him, meaning not a whole lot got in his mouth... still fun, nonetheless!



Benson post-banana eating



Soapy headed boy in the bathtub

Wednesday, January 23, 2008

Benson Update

We are still in the hospital trying to get our little guy well. He hasn't improved much, if anything he has gotten a little bit worse. The doctor says that is normal with this virus. It gets worse before it gets better. We're hoping that we're approaching the peak now. You can click here to read a little more about RSV.

They changed his medicine today that they are giving him through inhaler. They switched it from zopenex to albuterol. They are hoping this one will be more effective. He still has very thick secretions in his lungs so the doctor has them beating his front and back every three hours to loosen up the mucous in his lungs. He really doesn't seem to mind it that much.

They also started using a suction catheter to get the mucous up and out of his lungs. He HATES it. The stick a tiny tube up his nose and down into is throat and suction the gunk up. If mucous stays in his lungs for an extended period of time, it could get infected, leading to pneumonia, so the doctors are pulling out all the stops to prevent that from happening.

Big news today: He's cutting his first tooth... Well, TEETH actually--- There are two teeth on the bottom in the middle that are peeking there way through. So, poor guy, not only does he have RSV to deal with, but the bothersomeness that comes along with teething as well. He's done pretty well though. He goes through times that are difficult where we can tell he's just uncomfortable, but overall, he's our same sweet little Benson, just smiling and being adorable, wanting to JUMP every time his feet touch the bed or the ground.

In the last post, I said that I was hoping they would use the little oxygen tent over our bed instead of the tube in his nose. I didn't realize that in the tent, they pump in oxygen and a cool water mist. Both benson and I would be stuck in the tent and we would both be wet and cold. SO, I take it back... I do NOT want that, but he has grown accustomed to the tube in his nose and seems to be doing well with that. We are still a little concerned because his oxygen levels are dipping down very low quite often. The doctor says this is because of the yucky secretions in his lungs and throat that are preventing the oxygen to get to his blood. When he sleeps, it is especially bad. When he coughs, it clears the way a bit, and that helps, but we're hoping the new additions to his breathing treatments will help.

Please continue to pray for his little body to gain strength to fight this thing as well as endurance for us as the days and nights are long. We are blessed to have such wonderful family who have been here with us day and night helping us along the way and are so thankful for the many prayers that have been prayed by our friends and family. The Lord has been gracious to hear them and he continues to show favor upon us and bless us. We are thankful!

Tuesday, January 22, 2008

Benson's hospital visits #3 and #4 (note: I counted birth as hospital visit #1)


It seems that every post lately is about Benson being sick... well, it seems that our entire LIFE lately is about Benson being sick, so it's only appropriate, I guess. Here's the latest:

Benson started coughing Friday morning. We had planned for some time, to go to Maggie Valley to see the snow this past weekend. We packed up and headed up on Friday night. Saturday morning, he still had his yucky sounding cough, but he seemed happy and cheerful. All day long fell the most beautiful snow. We enjoyed getting to watch the flakes and play Nerts all day with Benjamin's family. And with the exception of the two minutes we went out to take this picture, we were snug as a bug inside all day.



Saturday night, Benson's cough worsened and he did not sleep a wink. Every time he would doze off, his poor cough would wake him up. At 6:00 Sunday morning, he started breathing really fast and started running a temperature of 101.7 We called our pediatrician and asked what to do, and they said to find a doctor's office in order to let them listen to his lungs. We found an urgent care that was open and they checked him concluding that he had an ear infection. So they gave us some amoxicillin and cough drops and sent us home.

Benson took a nap and woke up breathing even faster than before. His respirations were 80 breaths per minutes and normal is between 30-40. He was practically panting, as if he couldn't catch his breath. He had a temperature of 101.9. We called the pediatrician again and they said that 80bpm was very dangerous and we needed to get to an emergency room.

We packed our bags and headed to the hospital in Maggie Valley. As soon as we were in the car, Benson fell asleep. His respirations dropped to 60bpm. Since he was content and the Maggie Valley hospital was very very small, we decided to continue driving toward home and find a better hospital. We made it as far as Spartanburg and Benson woke up, his respirations reaching 80bpm again along with a wheezing sound. We decided to stop at the Spartanburg Emergency room. (Hospital visit #3)

We ran in and they assessed him, sending us directly to a room. They performed a chest x-ray and gave him a breathing treatment. His lungs were clear so they determined it was not pneumonia or bronchitis. After the breathing treatment, they sent us home.

We had a relatively good night and woke up in the morning only to find Benson breathing at 80bpm again and running a fever of more than 100. We called our pediatrician and they told us to come ready to stay the night.

We packed up and headed to the doctors office. Our doctor listed to Benson's breathing and was furious that the Spartanburg hospital had discharged us. He decided to admit us immediately. Since Richland hospital was full, we ended up being sent to Baptist Hospital. Upon arrival, they tested Benson for RSV (Respiratory Syncytial Virus) which came back positive. They have put him on antibiotics and steroids by IV.

They tried to put the IV in his arm, but they couldn't find a vein, (last time we were in the hospital, they had to stick him five times in order to get the IV in) so they put the IV in his head. I have never seen anything like it. It took me by complete surprise and really upset me when they walked in with his IV sticking out of his head, but they reassured us that they did this all the time. (The baby next door has the same thing) As it turns out, it is much better to have the IV in his head because it is out of sight, out of mind and he doesn't even really seem to know it's there. He has his hands free to roll and play, and so it has really turned out well.

Currently, they are concerned that his Oxygen levels are too low and they have tried to put an oxygen tube on his nose, but he refuses to wear it. They are considering putting a little tent over his crib and pumping the oxygen into that... I think that would be less invasive and more comfortable for him.

Please pray that his little body will be able to fight this off... There really isn't anything they can do... the virus has to run its course... there are very thick, stringy, mucousy secretions in his lungs that are making it difficult for him to breathe through his nose and mouth. Please ask the Lord to give both us and him strength to get through this time. We appreciate your prayers.

Kisses for Grannie

Loving aunt Ash

They've got us under quarantine. All the doctors and nurses have to wear masks and gloves to enter. I find this interesting since RSV in adults presents itself as simply a runny nose. I think it's just that they don't want to take the risk of spreading RSV to the other babies on the hall.

Granddaddy came to visit on his way to work.

Playing in his exersaucer.

As a side note, we have checked his diaper for blood and it is completely clear, so we have confirmation that he is indeed milk AND soy protein intolerant and as long as I stay away from milk and soy, we can continue breastfeeding. The doctors continue to encourage us that even though it is difficult, this is the best thing. With as sensitive as his stomach is, there is no telling whether or not he would be able to stomach even the Neocate, so we are so thankful for being able to continue breastfeeding. Not to mention it would cost up to $1,000 a month to put him on it. Not many mamas get practically PAID to breastfeed. I consider it a blessing and honor to be able to do so. Between cloth diapering and breastfeeding, Benson is practically free! Haha, well, except for a bazillion dollars in medical bills!! :) The Lord has and will provide! Thank you, Lord!

Sunday, January 13, 2008

Update on Benson's tummy situation

The Gastroenternologist that we saw last week examined Benson and tested a sample of his stool for blood (we couldn't see any in it) and discovered that he did indeed have more microscopic blood in his diaper. I was shocked. He said that he thinks Benson has a Soy Protein intolerance in addition to his milk protein intolerance. We knew when he was diagnosed with Milk Protein Intolerance that 25% of children who are allergic to milk protein are also allergic to Soy Protein, but the doctor said that since soy was in everything, there was no need to cut that out of my diet until he showed adverse signs when exposed to it. Since I was mixing his rice cereal with a soy formula (which is what the doctor suggested I mix it with- well, he said I could use breastmilk, but since Benson gags and refuses to eat it, I figured why waste the "liquid gold" on rice cereal!) both the gastroenternoligist and our pediatrician seem to think that it is a soy protein allergy. And it means that the "virus" that put us in the hospital a couple of weeks ago, wasn't really a virus at all, it was a severe allergic reaction.

SO... that means no soy for Mama!

It really isn't that bad... I've basically just gone through the labels of everything I could eat before- all of my dairy free foods- and checked them for soy. Of course yummy things like SILK and SILK yogurt and soy margarine and Tofutti Cuties (Soy Ice cream sandwiches) are all out... BUT there are still a good number of things that I've been eating that I can still eat... I'll be converting my "dairy free for baby" site, to a "soy/dairy free for baby" site. Every once in a while, someone stumbles upon it and borrows a recipe and leaves a comment to let me know they've been there.... plus, when I was google-ing soy/dairy free recipes, my blog popped up! I felt famous! :) Mostly, it's a way for me to keep track of things I've had so that I don't forget to put them back in rotation on the weekly meal plans. In addition to that, the articles that I have read online say that many families who have a child with milk/soy protein intolerance end up having other children with the same allergy. So, I'm thinking it'll be good to refer back to this collection of recipes should that happen to us.

That being said, Benson is doing great so far. He hasn't gotten sick again. We are waiting two more weeks to try rice cereal again (mixed with breast milk or juice) so we'll see how that goes. As of right now, in addition to nursing, he's eating different fruits and vegetables. I've tried applesauce, bananas, pears, sweet potatoes, prunes, sweet peas, and green beans and out of all of them, he likes NONE of them. Not even a little. It's really hard to feed him, because his face when I put the food in his mouth, breaks my heart. (I'll try to get a video of it so you can see what I'm talking about...) His favorite part of eating is when I take the bib off and get him out of the high chair!
We'll keep trying new things to see if he will grow to like them, but at least he isn't getting sick anymore. Hopefully we've found the root of the problem! I'll try to keep updating!

Smiles and Laughs


Mama and Donny with Benson


Benson loves bath time! He's just discovered that he likes taking a bath on his belly the best because he can play with all the cool bath toys he got from Nana J. for Christmas! Thanks, Nana!

video
Layne and Mark came to visit for the weekend. Benson thought Layne was the most hilarious girl he'd ever met! I think he's got a crush on her! We had so much fun!!

Wednesday, January 9, 2008

Sick again :(



After we were in the hospital, the doctor told us to wait ten days before giving Benson rice cereal or baby food again. Yesterday was the first day we could feed him food again and we did... and two hours later, he started throwing up bile again. This time, he became very lethargic and floppy, which scared us. We called the doctor and since we saw last time, through the upper GI, that he does not have twisted bowels or an actual obstruction, they told us to give him Pedialyte for a few hours to let his intestines rest and call them if there were any changes. After about 4 hours of throwing up, he was back to his old self again, with the exception of some extremely foul, like nothing you have ever smelled, diarrhea.

The last time this happened, I had given him rice cereal after he had not had it for about a week and a half due to a throw up bug he had the week before. It's just too much of a coincidence that both times he starts throwing up bile is two hours after feeding him rice cereal.

So of course, I got online and looked at the "University of Google" and I think he has an allergy to rice. I think there are some other intestinal issues, but from what I've seen, this is one of the things he has going on...

We have an appointment with a Gastroenternologist this afternoon so hopefully we will get some more answers. Below you can see Benson AFTER he finished throwing up.... and BEFORE we could let him nurse again... he's a hungry boy!!

video