Saturday, December 31, 2011

Hospital Update

Jax needed oxygen to get through the night last night (Friday night), and then I woke up around 2:30am to him coughing badly. I was sure he got his Albuterol treatment from the nurse at 2am (since I knew he needed them every 2 hours and I had figured out all the times in my head) so I felt concerned. I called the nurse and she told me they changed the orders to give it to him every 4 hours to see how he would do.
Really? In the middle of the night when he is on oxygen and in distress? Mkay, no.

So clearly the "respiratory" guy came to check him and agreed he still needed every 2 hours, and after that treatment, Jax settled down and got a little sleep. As much sleep as one can get when having a nebulizer treatment every 2 hours.

This morning Jax didn't seem to want to get up. He failed his first urine test (they test the concentration of his urine from a cotton ball in his diaper), so they were starting to talk about needing his fluid increased to keep up. Jax took a 1.5 hr nap in the morning and then Jason came for the day. They decided to increase the rate of the Pedialyte to get his fluid intake up. Jax puked a few times on and off during the day, but we were able to space his Albuterol need to every 3 hours. Jax failed his second cotton ball test and now he's on the clock to get better otherwise he'll get IV'd.

We pushed up his rate a bit on the fluid and added a small amount of food to it hoping it would help his energy level. He did well this afternoon and early evening showing a better cotton ball. Although Jason just told me Jax had a large vomit, so we'll see how his hydration tests tonight and in the morning. There's starting to be a lot of dried blood in his vomit. We're all assuming it's from so many breathing treatments.

Jax wasn't very high spirited today. He only sat up a few times to play with a toy briefly. He sat in the chair a few times with us, but ultimately kept wanting to lay back down in the bed. He snoozed off and on, but really just laid there with his blanky. I stayed until he was in bed tonight and came home while Jason takes the night shift. I haven't slept in two days and will hopefully get re-energized this evening and get back early tomorrow morning.

So, Jax needs to be stable in two areas to get home:
(1) He needs to stay hydrated with only the use of his tube.
(2) He needs to not require oxygen while sleeping.

I think we'll know pretty quick in the morning if he's going to be staying.

And what's a hospital stay without Jax's classic hair washing cap moment. Too bad he's super sad in this one :(

Friday, December 30, 2011

Ticket to the hospital

We've had quite the last few days. Last night, Jax wasn't responding to his Albuterol treatments and he really worried me. I checked his O2 levels and it wouldn't get out of the 80's. I called an ambulance and texted Jay (he was in Missouri). Jay called our neighbors (who is a doctor) and they were there quick. Our neighbor stayed with Brady and Jax and I were whisked away to Children's Hospital.

Jax would do well with their Albuterol treatments, but soon enough start to decline. His chest X-Ray was clear, so their thought was that Jax's Chronic Lung Disease was causing him to not respond well to the virus (which was the original thought from the doc the day before). They did see that his other ear infected, but that wouldn't be the lung issue. They gave a liquid anti inflammatory steroid (Orapred) that seemed to help, and got him to get his O2 sats up in the mid 90's. After a few hours, they let me take him home (my neighbor threw Brady in the car at 3am and got us), but I had to take him to the pediatrician first thing in the morning and give Jax that liquid steroid for the next 4 days.

Well, at this point Jason is catching the first flight home this morning, and I already have the boys packed up to get to the doctor. Jax did well at the appointment, but the doc wasn't pleased with how bad his lungs responded to this cold. She told us to stay the path of Albuterol, the antibiotic and the new steroid. He should not show any further decline.

Fast forward to after nap time and Jax couldn't stop coughing and vomiting. Jason and I held him down to administer Albuterol, and it didn't help. This was about 2 hrs after the last dose I had given him prior.

I took him immediately back to his doctor and he was down right miserable. His O2 was back down to 88-90 and his energy was gone. The doc didn't like that he needed Albuterol so often. The little guy bought himself an admission to the hospital!

So we're here now. Rachel and Dennis took Brady, and Jason brought Jax and our things. They have Jax on Albuterol every 2 hrs to keep up with him (hmmm, how to sleep?) and a slow Pedialyte pump overnight. Let's hope he keeps that down so we can stay away from the dreaded IV!

Please send good thoughts so that we can be out of here soon, and pray for the hospital staff since I'm tired enough to possibly go bat poop crazy on them if they wake him up more than necessary - love teaching hospitals!

Wednesday, December 28, 2011

Another right ear infection, just on a different child.

Oh my goodness, it just never ends lately. Jax has been responding to the cold that Brady gave him pretty good. He only threw up once on Christmas night and has never had a fever over 99. Last night his coughing started to pick up and the puffs of Albuterol that Jason gave him from the inhaler didn't seem to help. I hooked up the nebulizer and filled it with liquid Albuterol and that seemed to help him get through the night. I didn't like the sound of a few of his gagging coughs, so he bought himself a doctor visit today.

The doc found an ear infection and fluid in the other ear. She said his lungs were free of fluid, but he was on his way to lung issues with this cold if we didn't get it under control. I have tripled his FloVent steroid right now and hope it helps protect his lungs. The antibiotic he's starting tonight may help fight bacteria away from his chest, but that's not a guarantee.

So, we just need to give him these steroids and hope he can fight this off without it getting worse in there. The doc said he needs to get into the ER if our Albuterol efforts ever don't work in the evenings (which we already knew that) and she wants to see him back in a week regardless to discuss his lung medication. She doesn't think his nightly steroid is "preventing" well enough for him to wheeze this easy with a cold.

I'm pretty sure this fall and winter has been the worst with colds! I'd like to go back in our bubble now!

I'm also in the process of filling out insurance paperwork that's up to my eye balls. It's renewal time for Jax's disability Medicaid. You'd think I'd be used to the 15 page packet and all the reports I need to collect from every therapist, doctor, specialist and now teacher, but it seems so odd that I have to include these and also sign over all rights to records that they'll retrieve themselves. We have to give just short of a DNA sample it seems, so how in the HECK do people get away with Medicaid fraud? I know our program is for children and it's a private program that doesn't go by income, so maybe there's a different process for straight Medicaid, but we even get a home-visit to make sure the house is nursing home capable and to see the child. Either way, the program has saved our financial lives, so I will continue to gladly give them whatever they request!

I'm also filling out insurance papers for myself since my insurance premium is going to double in a month - isn't that randomly nice? The reason stated is "new medical technology". Say what? I"m pretty sure I'm not using any new medical technology since if I did need to, I'd assume my individual insurance wouldn't even accept me.
Jason's company offers a family plan, but doesn't contribute any money toward the premium, so at full cost to us, it's OUTRAGEOUS. We're talking $1k/month out of pocket. So we buy mine as an individual (thankfully I'm healthy enough to qualify) and we buy Brady's through the state. Did ya'll know that you can buy your child's medical insurance through the state of WI if your employer doesn't contribute? Even at paying full price for Badger Care (which is the bracket we're in), it's still cheaper than individual plans (of which Brady wouldn't qualify for since he was a low-birth weight preemie, crazy huh?).
Ahhh yes, medical insurance. Good times. It's also neat to deal with 4 different insurance plans in one house. I guess we need to be thankful that we all have it one way or another!

Monday, December 26, 2011

Christmas wrap up!

Hello and Merry Christmas from us!
I've been trying to update the blog for the past 24 hours, but I was having computer troubles - and now I'm all good in the hood again.

Last week we attended Grandma Lettenberger's funeral proceedings. The gathering was sad, but the family-time was amazing. Brady's cold was taking a turn for the worse that day and I was really starting to feel it as well. By the time Brady got into bed at his Nana's that night, he started a fever again - and you all know what that means...
Jason brought the boys home a day early and he ran Brady to the doctor, and yes... an ear infection. That's 2 in the course of 6 weeks and he's only had one before all this, how strange! He is now on day 4 of 5 with his meds and doing a bit better, but that runny nose just won't go away.
I felt really sick on Christmas eve night and completely lost my voice by the end of the night. I still sound really horse. Poor Jax has picked this all up as well and his tiny little man voice is horse as well. I've got the humidifier going and the Albuterol on hand, so let's hope that's all the damage this will do him.
Other than illness hitting at the most inopportune time, the holiday was really nice. We were still able to  drive up to Kewaunee to see my family, and saw some of Jay's family on the way down. Christmas day was a busy day with both sides of our immediate family visiting - good food, people and of course, gifts!

Boys opening gifts with Great Grandpa Wally and Nana Jayne.

Great Grandma Laura putting the mittens that she made on Brady.

Bumpa Les and Jax.

Grandma Carol and cousin Karl.

Grandpa and I

Great Gma and Gpa Sternitzky with the wiggly boys.

My tall cousins!

Aunt Beth and Uncle T with smiley Jax.

Uncle Jim, Aunt Colleen and the silly boys.

Josh and Drew (cousins) with the boys.

Performing skits and the Twelve Days of Christmas at the Hoffman's.

Jay and Rick doing their best impression of the 'Twelve ladies dancing' as their part!

Grandpa Klingeisen with some of his grandchildren and great grandchildren.

The boys on Christmas morning.

Very excited!

Uncle Adam playing Santa and handing out gifts - cool scooters!

Christmas scene

Nana and Bumpa with their grandchildren Christmas day.

Jax trying on Anesah's cheese head.

Nana and Papa with their grandchildren Christmas night.

Jax cuddling up to Anesah to watch her play on her IPod.

Uncle Clint taking one for the team and letting the boys "help" him play air hockey against Aidan.

Football tackling!

All the girls.

Wednesday, December 21, 2011

Busy busy, and a little sick

We've had a whirlwind few days this week. Brady had a fever last weekend, and it turned into quite the cold this week. I have now caught it and feel super lousy. I don't know how likely it is that Jax won't get it, but here's to hoping.
We all attended Jax's Christmas party at school this morning. The boys got to see Santa again, but this time Brady was terrified and Jax was fine. When Santa came into the room, Brady started crying and Jason had to hold him away in the back. Jax went up by himself to get his present when his name was called so I got a quick photo! Brady's name wasn't called until the end thankfully, so at that point, he had warmed up and walked up to Santa with me and even gave him a hug. We assume Jax felt more comfortable with since he's used to being there and he knows a lot of the people that were there - a comfort thing I suppose!
Tomorrow we'll be leaving first thing in the morning to attend all the services for Grandma Lettenberger's funeral. Jason is going to stay by his family with the boys for the night, while I come home to do the final grocery shopping, cooking and CLEANING of this stye of a house for the open house on Christmas day. I'll meet back up with them and we'll do our tour of grandparents and some family for Christmas Eve day and evening, and then come home to crash. I heard that Santa maaaaaay be stopping at our house that night for the boys, but we shall see!

I was upstairs for maybe 10 minutes putting away some laundry, and Brady did the following things:
Poured himself a bowl of goldfish crackers, which spilled (and crushed?) on the couch, and conveniently into the crack of the cushions.

Took out the two milk pitchers (the original milk container broke) and proceeded to take the covers off, dribble milk and do who knows what...

OH, try to pour himself a GLASS of milk, which I found shattered in the sink. Maybe the glass was sitting in the sink already? I have no idea. I'm glad it was in the sink since I didn't hear it break, but man... I'd love to be in this kid's head sometimes!

Jax getting his present from Santa. That's one of his therapists who held his hand when he got up there.

Cool books from the big guy!

The boys sitting in the classroom afterward waiting patiently for their juice and cookies with their neat twisty straws.

Monday, December 19, 2011

Remembering Grandma Lettenberger

Our weekend has been extremely quiet. Jason's grandmother passed away unexpectedly, so you can imagine the heavy hearts. All my love and prayers go to the entire family while I try to preserve any memories I can for the boys.
Here are a few memories of the past few years...

Thursday, December 15, 2011

Where are the hiding places?

Tell my kids to stop hiding things!
Brady broke into Jason's wallet the other day. I saw him with it, so I took it from him. The next morning at the airport, Jason noticed that all his cards were moved around and he was missing his frequent flyer card and a credit card. Ask me if I can find them at home... that would be a no.
Now let's talk about the ornaments on the tree. The boys don't touch the "tree", but rather, they love to play with the ornaments. Ask me how many are missing... a lot.
I have this image that I'll find all these random things some day in a really weird place when the kids are off to college.

The boys had their Christmas party at Health Reach today. They did much better this year than they have in past years. At first they refused to go in by Santa, but after they watched another little set of twins do it and get PRESENTS, then they wanted to. Shocking.
Jax had an amazing day of speech and feeding therapy with Mr. Nick. We also found out that he was approved through insurance for another full year of weekly speech on top of his feeding, so that was some surprisingly good news. Mr Nick said that kids that get 2 days a week at school tend to get denied any private sessions, so I'm glad to see we get the extra help.

Brady sorting through puzzles during our library visit.

Brady found a Santa hat during the party and wouldn't take it off! Maybe I should put one in his stocking :)

Jax saying "Bubbo POP"

Slam dunk Jax!

Santa photo! Can you tell Jax only cared about the present and wanted to be far from the people in red!

Craft time!

The boys making ornaments with another set of identical boy twins in plaid fleece shirts! The boys are named Jackson and Brian, how crazy is that? Jackson has a speech delay and his brother Brian needs a wheel chair to get around from nerve damage due to low blood flow. I was shocked when the mom told me this story! She asked about my boys and I told her our Jaxon was a reverse from hers and he has nerve damage in his GI system requiring feeding tubes so far. She shook her head in amazement. There were 4 sets of identical twins at this party, and we were the first of three parties (it goes by age groups). I guess the moral of the story is that sharing a placenta is the pits! (I say that with a half smile)

Tuesday, December 13, 2011

Broken tires, but not broken dreams!

The boys and I had quite an eventful day today. Jason texted me at 5:30am telling me that he saw the tire on the truck flat, so he ran it to the corner gas station to fill with air for me before running to the airport this morning. I had to drop Jax off at school and then get to our neighborhood mechanic to look at the tire. I made it there ok, but the tire was definitely going flat again. Mind you, we just had it repaired a month ago for a nail in it.
Brady and I waited patiently (thank God for the sucker in my purse) and we come to find out the tire is irreparable. So I thought, "no biggy, we'll put on a new tire since we were planning to replace them in spring". Well, it turns out that you can't have one or two new tires and two old tires because of the suspension system... or something like that. Soooo, that was a surprise $1,000 bill we weren't expecting for a few months. Such is life!
I told the mechanics that I had to pick Jax up from school and I had no option than to bring the boys since Jay is in Texas for the day, so they overfilled the tire so I could run out and they were ordering my new tires in. I got the kids their food and some toys and we went back. We waited for TWO and A HALF HOURS because the delivery truck with our tires broke down - oh the irony!
You can imagine how the boys were for the last hour... oh my gosh, I'm exhausted from their non-stop antsy hands and curious legs.

On a good note, I got THE call today while we were sitting there. A feeding clinic coordinator called me and said Jax was next on the list to schedule for the inpatient intensive feeding program.... I was speechless! This is the thing we've been talking about for years, but it always seemed so untouchable. Now he's officially scheduled for Monday, Feb. 6... EEEK! I'm waiting for the official paperwork packet with all the information. All I know so far is that it's 2 straight weeks and I will be staying with him. I don't know anything else yet, and we'll have to figure out all our coordination of life for those 2 weeks.

All this is contingent upon Jax passing his swallow study next month, which I feel confident he will. It's never been thought that Jax has a mechanical issue with his throat (ie, he can chug water), so hopefully that all goes smoothly.
Now of course, I do still understand that if Jax isn't taking his feeds fast enough at that point that the program will be to start correcting his feeding behaviors and teach him how to eat with hopes he'll intake SOME of his meals by mouth (he currently, and always has taken 100% of his nutrition via tube). So I need to keep my expectations (aka - hopes) to that instead of a full force weening effort.

Jax has been kicking butt with his tummy lately and I have his pump rate close to 100 again. Cross your fingers we keep going!

Sunday, December 11, 2011

Getting more speech, woot!

The boys had a good time at school on Friday, and after Brady's class, his therapist was excited to tell me she heard Brady say "done" and "go". I momentarily worried that she felt that was an explosion for him (he's said these words randomly throughout the year). But she followed it up with saying she was going to give Brady an extra one-on-one session each week starting in January - YAY!! I think we'll be setting up that class right after I drop Jax off on Tuesdays. I'm not sure how this therapist got the extra session, but we'll talk more about that later. I'm so happy that between the school district and our private therapy, that Brady will get help 3 days a week.

As for the weekend, it was nice and quiet. We took the boys to the chiropractor since Brady was up all night coughing Friday with what seemed to be the start of a bad cold. I'll be taking them back on Wednesday, but oddly... Brady's cough got amazingly better and so did his runny nose. Huh, that's fabulous! Jax is still doing well with his food, so I hope we get a good run here.

We stopped over at the neighborhood Christmas party last night, but that was pretty much it for Saturday. This morning we all got up early and actually took the boys swimming at the YMCA. They loved it and are starting to get the idea that kicking and paddling is swimming. We got some errands and cleaning done and had some friends over during the Packer game. We loved meeting little 8 month old Aubrey. Jax kept saying, "HI bebe!"

Back to the grind this week. Bundle up everyone, it's getting so COLD now!

This would be Brady hiding his head under his bed when I walked in during his "nap time". I heard some commotion and sure enough, he got into the bags in his closet and made a mess. He thinks if he can't see me... I can't see him. I couldn't help but laugh!

Three little monkeys - Jax, Aubrey and Brady (and Brady's Toy Story dolls)

Thursday, December 8, 2011

Strong tummy

The boys have been behaving pretty well the last few days. Don't get me wrong, there's still about 1 time out per day up their rooms, which seems to really be catching on. Although sometimes Brady goes up to his room when he's upset and will slam the door and throw himself on his bed - nice.

Jax's cold is doing much better than expected. He has a slight raspy cough that I'm hoping his Budesonide breathing treatments will keep his lungs protected against. Brady started a slight cough today, but he's got iron lungs, so it usually doesn't cause issues. I'm LOVING Jax's tummy strength since yesterday. He took his first full feed yesterday for the first time in two weeks. In the past 4 weeks he's had Walking Pneumonia, a GI bug and a cold, so it's nice to see him taking his food again. Now I need to work on getting his pump rate back up to where we were.

I thought Jax had the colors yellow and blue down, but now he's back to saying "lellow" for every question asked about color. If I remind him cookie monster is blue, he seems to remember for a few minutes what blue looks like. He still counts his socks and pants legs when dressing, so we're still strong on that front!

Brady seems to have better and better receptive understanding. I can pretty much tell him to bring me XYZ and he does. I may make flash cards for the potty after the holidays to work on potty training since it seems obvious that he won't be able to say it any time soon. I feel like if he understands it, we can start the work and maybe a flash card could be used to tell me. I don't know exactly how we'll do it, but I've got my mind thinking about it. I'd love to consider starting the process by February. I'm sure the therapists can give me pointers on how to train children with severe speech delays.

I've been getting a bit more concerned about Brady lately since he just doesn't seem to show progress. Not that Jax is fluent in speaking at all, but we can at least see the progress of Jax attempting the words and attempting sentences where we can pick up a word or two and understand what he's saying. Brady's words are so off, that there is still virtually almost no verbal communication other than "bye-bye, dada, and thank you". I'm really hoping the district will agree to more help for him after the holidays. The more I read about childhood verbal apraxia, the more I think it may be Brady's problem. He is so "bright" and has no other medical issues that would explain his delay. He functions perfectly fine socially and cognitively and he's been in therapy since 18 months old. He's given the tools professionally and in the home, so environment isn't the problem.

He truly seems to have a pronunciation issue since he'll say something completely different when asked to repeat a word or a sound. I'm no speech therapist or pathologist though, so I'll leave that to them to decide and treat. He's been on their radar for this diagnosis for the past 6 months, so I think they're waiting for him to officially be 3.5 yrs old or 2 full years of therapy to see if that really is the problem. Both of those terms are fulfilled next month "after the holidays", so we shall see. He still gets one session every other week by our private therapist (Mr Nick), and then he gets a session every Friday through the school district with 4 other little boys and 2 other speech therapists. So I have a total of three professionals to help make the decisions going forward.

Jax had feeding therapy today and I'm told he had his best day ever. He took many drinks of his smoothie and decent sized bites of yogurt from a spoon. It's amazing how willing he is to do this when his GI system feels good and when it's from someone other than Jay or I outside the home - grrr! Either way, I'm happy to hear he did well today.

My bums watching the Tom and Jerry Nutcracker movie and acting out the scenes with their toys. And no, Brady still hasn't put down his Toy Story dolls.

The feeding therapist gave us this cup today. It helps Jax not need to tip his head back so far when taking drinks to promote more volume being drank. I'm excited to try it!

Monday, December 5, 2011

Hangin' tough

Jax slept pretty decent on Sunday night and only woke up once at midnight (he was actually crying from what seemed like a bad dream). He didn't throw up at all today and his O2 level was good. I never got a temp reading higher than 100 either, so I'm a bit shocked how well he's turned around since Sunday afternoon. The slow Pedialyte pump overnight seemed to really hydrate him, so I'm so glad we did that.
Today I gave him half-feeds mixed with Pedialyte, and I'm hoping to start giving more food soon. If he does well through the night and seems fine in the morning, I'll let him go to school tomorrow.
Jason has an early appointment in the morning and is leaving at 5am, so we asked Saint Nick to come early so we could all be together to enjoy it. The boys LOVED it, here are some shots!
(I've come to realize from my out-of-state friends that St. Nick isn't celebrated nation wide in the US. It's a European tradition that is celebrated in heavy German Christian areas of the states.)

Once Brady got his hands on the mini Buzz and Woody dolls from Toy Story, he pretty much sat in the corner hoarding them with pure HAPPINESS. He's sleeping soundly with them right now.

A slinky and a tube of tiny dinos!

View Masters! We went all old-school!

Priceless... (and you can bet Brady has claimed those dolls for eternity)