Thursday, August 28, 2008

Never a Dull Moment

Yesterday around 11:30am, I heard screams coming from the older boys' bedroom. Jackson and Lincoln were "playing" in there. Jackson likes to pick on Lincoln, so my first thought was that he was just bugging him AGAIN. But, I quickly realized that the screams were more serious and not stopping. Lincoln met me in the hallway with blood gushing out of his chin. I took off his shirt (which was, thankfully, red!) and tried to hold it on his wound to stop the bleeding.

Ever try holding a strong, 30# toddler still...while he's crying and in pain?

Once I got a good look at it, I could see he needed stitches. So, once again, I called Greg to come home. I needed him to help me hold Lincoln, so I could get the bleeding to stop (or at least slow down) and then to stay home with Jackson and Taylor while we went to the ER. By the time Greg got home, Lincoln had already calmed down and I was able to get a bandaid on. I was surprised that the bandaid worked. Greg washed him up (had blood all over his neck and face) and I got ready to go.

Once we got there, they put us right through to the pediatric ER. I was glad about that, because with his CF, he shouldn't be in a waiting room full of sick people and I was prepared to "fight" for that, but really hate doing that, so I was glad I didn't have to. They put some numbing gel on his wound and then gave him a blend of Benadryll, and Tylenol with Codene. That combined with the fact that it was his nap time, he went to sleep pretty quickly. They waited 40 min.'s for the gel to work and came in to suture. He woke up for that, but didn't feel it. The nurse wrapped him up tight in a blanket and I held his shoulders with my hands and leaned on his legs. The nurse held his head still and the Nurse Practioner did the suturing. There were two students observing...not sure if they are nursing students or what.

I wasn't sure if I wanted to watch, but after the first suture, it didn't bother me. It looks so wrong to see someone "sew" flesh (sorry, everyone!), but I know it had to be done. I had been hoping they would glue it, like they did Carter's forehead a few years ago, but they said it was too deep for that. It makes me wonder if Carter's wasn't too deep and they should have sutured rather than glued. And now that I think about it, I think our Dr. friend who was there and came to see us in the ER suggested that, but the younger dr. seemed set on glueing. I wanted the least invasive choice, but I'm not a Dr.! Oh well.

So, anyway, Lincoln is fine and not bothered by the sutures. It has been difficult keeping it dry as it's right by his mouth and everything he eats and drinks gets on it. And, he likes to take his bandaid off. But, I think it will get easier, as he gets used to it.

So, crisis over.

And, just in case we wouldn't know what to do with ourselves to have a relaxing evening after church, Carter decided to throw us off with puffy eyes that are so swollen he can hardly open them. It happened once before, last year, sometime. We never knew why and it went away in about 36 hours, I think.

I'm not sure what caused it, but I have a theory. Last night, someone gave my kids a box of Reese's cereal. Carter knows he can't eat it, so that's not the problem, but Jackson and Lincoln were eating it while we were waiting for Daddy, so we could go home (we drive separately, so we could have left, but I usually wait around anyway). Then, all three were sitting in the back seat, with Carter in the middle. That's because this week, I'm picking up 3 girls at school when I pick up Carter, and dropping them off at their home, so I have them sit in the middle seat (2 by Taylor and one up front with me). Anyway...I'm wondering if the boys had peanut residue on their fingers and at some point touched something that Carter touched and then he rubbed his eyes and they reacted to that. Makes sense to me! Greg and Carter ran out for Benadryll chewables last night, but it hasn't made much difference. He's home from school today and we'll see how it goes.

I wonder what today will bring!!! Haha

Taylor's Growing!

Taylor had a check up last week and weighed in at 13 #'s 11.4 oz. That means, she put on a couple pounds since having pneumonia. That's amazing girl! So, she's up from 3% on the growth chart to almost 15%. Not bad! The day she was admitted for her pneumonia, she had only gained 5 oz. in the previous 4 weeks, so I was expecting her to drop off the growth chart completely and feared the Docs would say it's time for a g-tube. BUT, Praise the Lord, we don't have to consider that now.

Saturday, August 16, 2008

Family Photo Shoot & Kindergarten & Health updates

We finally took the time to get everyone ready for a family photo shoot. A college age girl from our church is really into photography and does a nice job. We asked her to take pictures for us. We met her at Lake Parker Park and just started taking pictures! Many of you, who read this blog, have already seen them on my facebook. But, for those of you who have not yet seen them, here is the link.
http://www.new.facebook.com/photo.php?pid=1148291&l=be8bf&id=601081072

I'm really happy with the pictures. It's not easy getting 4 kids to smile and look at the camera all at the same time, but we have a lot of nice pictures and I cherish them! I'd like to do this more often now.

Carter starts Kindergarten on Monday! He's SO excited. He will love it. He loves being around other kids and he loves to learn. I can't wait to see him learn to write well and begin to read. This will be fun!

Jackson doesn't start pre-k for another year, so I'll still have 3 kids at home all day, lest you think I'll be bored with Carter at school! Haha! =) I'm sure you weren't thinking that anyway!

Taylor seems to be doing better. She's still on antibiotics for a few more days and the breathing treatments will continue, but we don't have to do as many a day. That's nice!!! The extra CPT (chest percussion therapy) will continue until I feel that most of the extra mucous is out of the way.

Jackson also seems to be fine. In case you don't know, Jackson had a 2nd seizure on Tuesday. His first one was on June 2nd. So...now the neurologist wants to do daily meds to prevent them. I'm not real comfortable with that yet. So, if you are praying for us, please pray that we don't need to go that route. I will probably wait until he has a 3rd one to make that decision. It could be months from now...or never! In the mean time, we have some medication to give during a seizure if it lasts longer than 3 min. So far, they seem to last about 3-4 min., but I honestly don't think to look at the clock right away, so, if it does happen again, I'm going to TRY to remember to look right away. I could tell it was coming on, so I could have looked, but didn't think to. And, that's the first question the dr.'s ask..."How long did it last?" Oops!

By the way...I never did post the results of Jackson's MRI. It shows a small scar on the left side of his brain. It probably happened from a head injury, though we're not sure when that might have happened. But, he's a 3 year old BOY...so...it could have happened ANY time! That could be the cause of his seizures. We'll do a 24 hour EEG in the near future to once again check for epilepsy. He wouldn't be the first child with CF and Epilepsy (though there is no connection between the two), so we'll see! I personally feel that we have enough health issues to deal with between the four kids, but, I don't think I get to vote. I can, however, petition and you can too (prayer)!

I was just thinking through all of the health problems my kids have and thought it'd be fun (?) to list it here. I'm NOT doing this for a pity party. So, please don't take it that way. It's just amazing to me, sometimes, to think through it all. I thought you might like to know too!

Carter:
Asthma
Peanut, Dustmite and Cat Hair allergy
Wandering "Lazy" Eye
Eczema
Jackson:
Cystic Fibrosis
Seizures
Mold allergy
Lincoln:
Cystic Fibrosis
Asthma
Taylor:
Cystic Fibrosis
Reflux
currently: pnuemonia
Also, as a note of interest, to some of you, anyway...the colors I put their name in, (above), are the colors I use at home to color-code their things so that they don't share and contaminate each others stuff, such as nebulizers, sippy cups, water bottles, etc. Works great!
Ok, I'm done! Have a great day!

Wednesday, August 6, 2008

Where do I start?

WELL....let's see...as usual, it's been a while since I last blogged. I'm sure it's hard to imagine that I have a few other things to do during the day that keep me from writing.

There is a lot to update on, so I'll just start with one kid at a time and try to get it all in, or else I'll come back later and finish. Let's just see what happens!

We'll start with Taylor, since, well, it should be girls first, right? Also, because her news is what has put a spin on our lives lately! She had a runny nose for about a week and a half. It ran clear, so I wasn't alarmed. With CF, any cold can become a problem, but in our experience, usually a clear running cold (ok, snot), isn't a big deal. If it were to turn green, we'd go get an antibiotic. However, this runny nose led to a cough and it got progressively worse until it was just really bad last Wednesday (July 30). She was breathing fast and her cough sounded awful (that's the technical term!). I had been in Tampa that morning with Jackson for his MRI, which I'll comment on later, so when I got home, I decided that she needed to see the Dr.
Her pediatrician was not in that day, so we saw one of his partners. The nurse took her vitals and weight and I was concerned with two things. First, I noticed that she had only gained 5 oz. in the past 4 weeks. That's NOT good. She's very small for her age already. Then, we found out she had a 101.2 fever. She had felt warm to me, but she always does and every time I took her temp, it showed normal. I had not taken it that day, though. As the dr. looked her over and reviewed her symptoms, I mentioned that she also has CF (I never know what they pull from her chart before they walk in the door). Immediately a light went off in his head and he said, she needed to go to the hospital. Ashamedly, my first thought was, "No, I have a conference to go to this weekend." I know that it's not uncommon for a CF patient to be hospitalized for 2-3 weeks at a time.
So, I went home and grabbed a few of our things. Made arrangements for someone to fill in at church and took her to the pediatric floor. There, they did a chest x-ray, some blood work, a sputum culture and hooked her up to an IV and antibiotics. They continuously monitored her oxygen levels.
Despite all the poking and prodding and unfamiliar territory, Taylor was a trooper and so happy all the time. The nurses and other staff fell in love with her and we had many offers to take her home! I always figure they say that to everyone, but I even heard them talking outside our door, to each other, about how cute she was! She is.
To make a long story short, after many breathing treatments and frequent nasal suction, she seemed to be doing well. The dr. couldn't release us until they determined what had been growing in her sputum culture so they would know how to treat her. In the mean time, RSV was ruled out and they were talking possible pneumonia. I talked with the nurses and the dr.'s and determined that it would be okay for me to go ahead and leave for San Fransisco on Friday. If that trip were for ANY other reason, I would have cancelled, no questions, but, this was the big CF conference that I have been working towards for several months and many (many of you) donated money to make it possible. The friend from church that she was going to stay with that weekend (had she not been in the hosp.) offered to stay with her as long as she was in and then take her home if she was released. I knew she'd be in good hands and there wasn't much I could do for her, so I went. It was not easy leaving her there, but I knew it was going to be worth the trip.
She was finally released on Sunday afternoon. They determined that the bacteria in her culture wasn't serious and could be treated with antibiotics at home. Greg went up to the hospital to sign all the discharge papers and help get Lisa and Taylor to her car. I got home Monday evening. I looked through all her hosp. notes and discharge papers and they mentioned pneumonia, but no one had actually said that's what it was to Greg or Lisa when she was being discharged, so I was unclear as to whether that was her diagnosis or not.
Today, Wed., she had her CF clinic appt. (good timing!). They had been informed of the hospital stay and I believe were consulted while we were there, but I brought all of the medical records and x-ray (on CD) with me. Her dr. reviewed the x-ray and told me that she did indeed have pneumonia. SO....added to her 4x's a day breathing treatments, 2x's a day antibiotics and additional chest therapy are 3 more breathing treatments (two are an inhaler used with a holding chamber, one is with her nebulizer), and another BID (twice a day) medicine. This should be interesting!
On a positive note, (and taking into consideration the difference in scales), she put on a pound in one week! YEAH!!! So, maybe the illness was keeping her from eating all she would have otherwise and hopefully her weight gain will continue. My biggest fear, these days, is hearing "G-tube" enter into the plan, so as long as she can put on weight by herself, we're okay.

I guess that's as far as I'm going to get for now. I'll just quickly mention that the conference was great and I'm glad that I went. It was the right decision. Thanks to all who helped me get there. You should hear from me soon (I'll try!) with more details and a thank you note. But, please know that I'm very grateful!

"Who Am I?" Awesome Video

Before playing this video, please scroll down to the bottom of the page and pause or silence my music player. Enjoy! This is awesome!!!

Music