Updates on Nolan

Nolan is better than he was but he is continuing to get fevers which we are treating aggressively with motrin. Aggressively means as soon as he reaches 100 we give him something to bring it down; normally I wouldn’t be so fast to treat it but my psyche can’t handle another seizure so soon.

He seems like his normal self, good appetite, active, silly, loving but a touch more fussy than usual. The Doctors have done some blood tests and a urine sample to rule things out. Some of the tests are still pending but some of the blood cultures came back negative for bacterial infection so we may be dealing with some unknown viral infection. He is on antibiotics for a possible UTI. At this point I am hoping that it is a UTI so we have something we can treat rather than a mysterious fever source.

Some fun news. We have begun signing with Nolan. The main ones we use are “thirsty” and “all done”. I started with those because they are the only ones I knew at the time. We are starting to expand now that Aunt Fab (who is now officially an OT!) gave me a book of signs for kids. Since Nolan is on the low end of his speech development it has been a relief for everyone for him to be able to communicate. He is pretty quick to pick up the signs which is fun to watch. He will pull out the “all done” sign when he doesn’t want his diaper changed or more recently at the doctors office when the nurse came in the room.

Will post more when we figure out what is going on.

Well, since the last post Nolan’s weight gain has been much better. We made it through the 18lb curse and have reached 19lb 2oz! I am not convinced it is due to the “hunger stimulant” he is on as his appetite still varies wildly. I think the plateau was due to his illnesses and surgery and he has finally gotten back on track from that. However, we are still giving him the meds for now, they don’t seem to be detrimental in any way and I could be wrong about their affect.

He still hasn’t found the confidence to walk on his own. He did take three quick steps between his Aunt Fab and I just this weekend so we know he can do it, he just has to believe in himself. We are trying to boost that confidence with exercises like getting him to take one or two steps between people or objects and by walking him all over creation and back while just holding onto his shirt. I am not too concerned with it really, I know he will get there one day and years from now it will only be a story about “he didn’t walk till he was two”. He had his developmental tests done recently and did very well aside from his gross motor skills issue. He came out right on target for his cognitive and way ahead on his fine motor skills. The doctors were happy and so were we.

Those are all “hooray”.

Today we had a “boo”. Nolan developed a fever that spiked high quickly last night. We gave him tylenol and it brought it down to a reasonable 101 for most of the night. Then early this morning it went shooting back up and before we could give him anything he went into a seizure. I was able to be calm for about 30 seconds of it and then freaked out because it seemed like he wasn’t able to breath. We called 911 and got the medics there pretty quick. By the time they came he was no longer seizing but was still chilling and very groggy. We ended up at the ER for awhile, they gave him Motrin which brought the fever back down quickly (it was 104 while we were there). They believe he had what I did about 10 days ago (a crud that is going around here) and that it was a febrile seizure and not anything to do with epilepsy. It has been a sleepy/fussy day but he is clearly feeling much better now, pretty much back to himself. We on the other hand are a bit wobbly.

the final “hooray” is that he is seemingly ok and up to his old tricks. There is a chance that he will be prone to these seizures. The stats are 30% of kids have them again and it may be that his complicated medical history makes him more likely to be in that 30%. And it may be that having these seizures means he will be more prone to epilepsy. But maybe not.

I, of course, really want his medical difficulties to be done, for him to have a hospital and mostly pain free childhood (ok, life is really what I want) because I feel like he has had his share. and we have too. We realize those are just wishes/hopes and that what will be will be and that we will do the best we can for him. But, oh do I hope.

Well, our computer has died so we have been out of touch and once again I am thankful for this site since we have put so many of the photos on it and we may not be able to get back any of the ones on our computer. That is certainly an advantage film has over digital.

Nolan is well. A real handful and getting cuter every day. He will climb anything that sits still long enough and has progressed to walking while holding just one finger but still won’t try it on his own. I keep telling him he would be so much happier if he just went for it, though it would mean a whole new level of vigilance on our part. We are bracing ourselves for the immanent “purging” of our breakables Nolan is going to help us with; we have too much stuff but we love every piece of it so we still have all of it, so far…

Nolan is great at making animal sounds, this morning we were hooting like owls, barking like dogs and meowing like cats. He also sings with me when I sing to him (which is often) though he seems to know different words than I do, strange. He is a pro at the “Itsy Bitsy Spider” and also enjoys some Patty cakes. He talks up a storm, unfortunately I can’t understand most of what he is saying which is frustrating to both of us at times. Other times we just laugh and keep going.

We have started going to the park which has been great. He loves the slide but most of all is interested in the other children. He is a bit shy at first but once warmed up will hit them with his “check me out” scream which makes adults laugh but kind of stumps the kids (they always look to me for direction). When there aren’t many kids there we climb up the slides, swing, walk the low walls, play with the mulch (move it here, now move it there, now back again) and watch the very tame squirrels. It is nice just getting out of the house and finding a good place for him to use up some of his ample energy.

Nolan’s weight has not gone up since November (some gains some losses all equaling out to just under 18 pounds). I saw a Dr (not his regular Dr) on Tuesday who brought up his G-tube but I vetoed that idea quickly. We are back to trying an antihistamine that also acts as an appetite stimulant (in 50% of the children). I had briefly tried it before his surgery though I wasn’t convinced it worked. I took him off it while he was on all the post surgery drugs because he was out of his head from them and I was not about to add another drug onto the mix. I have heard two different ideas about the results of this antihistamine, his pt said it will work quickly and if we don’t see a difference in his appetite right away he is of the 50% it doesn’t work for, then on Tuesday the Dr led me to believe we just didn’t try giving it to him long enough, that it would take a while to kick in… so we are going to give it longer this time, I guess, unless we get another opinion from his regular Dr. I will fight returning to the g-tube tooth and nail because I believe it will just take away from his desire to eat orally, but if someone presents me with a convincing plan I will give it a try if it will help Nolan.

That’s the news for today. No more pictures until we get a computer of some sort back in service. Hope everyone is well.

We went to the Urologist on Monday but don’t know much more than we did the week before. We go back in five months at which point all the swelling will be gone and he should be able to figure out the next step. Meanwhile we are supposed to keep an eye out for any urine coming out of the gap, if we see that it means he has a fistula and he will be having corrective surgery in the fall. The Dr said the fistula would be “easy” to fix but would still be a general anesthesia/intubation situation. And yes, another catheter… Ugh.

On the bright side of things it has been nice enough outside to spend most of the day in the yard (or the neighbors yard). Nolan loves to be outside so we are both loving the sun and warmth. Yesterday we took a push toy out on the street which he enjoyed. He fell to his knees several times but seemed to know just what to do and got right back up. After the third fall he complained a little but I think some of that was him getting tired from walking so far.

I look forward to introducing him to the park near our house. I have not been there but our neighbor says it is a good place for little ones and will satisfy his need to climb. It will be so nice to get him out of the house and for him to be around other children. He has been comparatively limited in his exposure to other children because of his health issues, but RSV season is over now and we are both ready to get out there! I hope to also introduce him to water this summer, by 2009 there will be an “aquatics center” at the park near our house so swimming (well, wading for now most likely) will be a good activity for us.

Happy Spring everyone!

In “toddle time” there are some photos from his first easter egg hunt at Mimi and Dindin’s; lots of families come over and spend the morning searching for treats amongst the trees. There are a few photos with his Aunt Fab who came down during his surgery to help out (Thanks Aunt Fab!), some of him playing with the wind chimes Mimi got him as a get well present and there are a couple of bath shots just to embarrass him later in life…

As Maria posted Nolan’s surgery went well though it took about one and a half hours longer than expected. I was pacing the halls afraid something had gone amiss in spite of my Ativan…

I got to be with him in the PACU to help calm him down and see if he would drink anything (he took juice) which kids have to do before they will let them out. When the Nurse took me back I could hear him screaming his displeasure before we got around the corner. I sang to him and snuggled him in warm blankets and watched his breathing and heart rate slow down on the monitor. I think we were both equally happy to see each other. We took him home about three hours after they finished surgery.

The week + after the surgery has been harder than I thought. Nolan has been out of sorts from the drugs (codeine makes him manic apparently) and in pain from the incredibly long catheter he had. The Dr. thankfully took out the catheter on Monday (again, holy smoke that was long!) and he has been better but still not the same happy camper as before. His sleep habits are also out of whack so we are having to get up all through the night. A few nights were pretty much all nighters, the medication he was on to prevent bladder spasms made him restless so he couldn’t stay asleep. He is off of it now so we are hoping he will settle back into his normal habits soon. I have spoken to a number of folks who have assured me that this is normal, that it often takes two weeks for them to get over the experience. I am personally looking forward to the return of Nolan, it has been stressful having such a fussy, sleepless toddler; I guess I have been pretty spoiled personality wise.

Just in the past two days he has finally started eating again and making up for lost time. He wouldn’t eat or drink for the first few days, so much so that I used his Gtube to keep him from withering away. After the third day he started drinking again but was not interested in food until Monday. Now he is eating all day! We are hoping this is going to continue and his weight will start heading up towards the curve again. However, Nolan likes to keep you guessing so we aren’t counting on it.

The only other potential bummer is the Dr. saw a “gap” in his stitches that could be just skin level or it may go all the way to/thru the urethra which would be bad. I couldn’t bring myself to ask what exactly it would mean, I wasn’t ready to hear the word “surgery” again. We will find out more on Monday when we see the Dr again. I still won’t be ready to hear he needs surgery, can’t we just duct tape it?

Nolan is out of surgery and the report is that it went well. They were able to do everything they needed to. Kara and Ronan haven’t gotten to see Nolan yet, but he should be in the recovery room soon and they’ll get to see him then. Thanks for checking in!

-Maria

Just a reminder for anyone checking the site on Monday morning, that Nolan’s surgery is today. We’ll get an update on the site as soon as we can after surgery, but in the meantime, please keep Nolan and Kara and Ronan in your thoughts and prayers.

love,
Maria

There are some new photos, mostly from the Alabama trip…

We took a trip to Alabama last week in part for a show Ronan was in and in part to see family. We drove to Montgomery the first night to visit with Aunt Noni and eat some of her always delicious food. Nolan got his first ride in a Radio Flyer wagon while we were there. The next day we drove down to Fairhope which is a lovely town right on the bay, lots of spanish moss, live oaks and southern hospitality.

Uncle Billy and Aunt Margaret (Kara’s mom’s sister) were kind enough to let us stay with them. Thankfully none of the boys (Margaret had five) and their families live too far away so we were able to catch up with everyone. Ronan got lots of help from the cousins, they came to set up, brought food, kept him company and helped him break down, which made things so much easier. (Thank you!). Nolan got to see lots of cousins, Aunts and Uncles, play with new and exciting toys and ride on a boat which he very much enjoyed. Kara got to do all of the above and also had a great time.

The only damper on the trip was that Nolan got a bad cough which started to turn into pneumonia. Happily, Uncle Billy is a Pediatrician and was able to diagnose early and prescribe antibiotics quickly. Both Ronan and I were pretty shaken by the experience, seeing him work so hard to breath was too familiar. However, Nolan was feeling better by the time we pulled into our driveway which his Pediatrician confirmed the next day. (Yes, we made record time home). He still has some gunk he is working up but his spirits are much better and his work of breathing seems normal.

Most of you know that next Monday is Nolan’s surgery, but in case you forgot please take a moment on Monday to cheer him on. It looks like we will have some extended family around for support too which will be a big help. We are hoping this will be the last time he has to be intubated in his life! In fact I hope that for all of you, may you never (again, if you have experienced it before) have to be intubated in your life. take care all, Kara, Ronan and Nolan