These pictures are from our stay at Children's last week:



He wanted to be called Batman then.


Mason came up with a Plan of the Day.


Bath time!


Keeping the IV dry.


Our reader. He devours books.


He was so excited to finish this puzzle. It's a lenticular puzzle and almost gave me a headache.


Snack time before bed.


Getting comfy in his bed.


Mason loved the room service. This is his lunch.


The traditional hospital picture. Maddox opted out of it this time.

One week

We are going to be here for a week. They are not letting us go home until everything is figured out. Hallelujah!

They are also going to change his tube.

Last night was horrible. The dr said he wanted Maddox to receive his tube feeding and have any nausea treated so he could get some calories and nutrition. I don't think he realized just how bad things had gotten with the vomiting.

They started the feeding at 7:00 and by 7:30 he started retching and having horrible diarrhea. At one point he was in the bathroom doing both at the same time. We used pull ups, but it just leaked everywhere. He was miserable. He was given meds, they tried auctioning, nothing worked. This continued until 3:00am, when the resident finally agreed to stop the feeding. Maddox didn't need any more meds and he slept. He did have diarrhea, but it was very mild, and didn't leak.

It was a horrible night, but everyone saw just how bad it gets. And it all happened just as I had been describing it to them. The nurses couldn't believe it. And the nurses were/are amazing! Oh my gosh. We have been blessed with exceptional nurses and aids. The doctor is also willing to think outside the box.

Today they tried his feedings at a very slow rate, but he started getting sick again, so they stopped the feeding and went to straight pedialyte. He has been tolerating it well and napping peacefully.

My prayer is that all these difficulties lead the doctors to the source of his troubles.

His nurse that admitted us yesterday just stopped in to see how he was doing. She has to work on a different floor tonight, but wanted to check on him.

I am relieved and a little anxious as well.

I am disappointed that we missed the big storm though!! I was so excited for that storm and had plans with the kids. There is only a couple inches here and it looks like a lot of it is melting already. Talk about boring. However, a little "boring" in our life is probably just what we need.

Sad

I am sad tonight. We are back at the Children's Hospital. Last week we were in our hospital from feb 16 until Feb 20 when we transferred to Children's. We were at Children's from Feb 20 until Feb 23. On Feb 26 we went to the ER at 6:00 am and went back again at 10:00 pm. Today, Feb 28 we were admitted to Children's again.

Feb 16 we were admitted to our hospital because Maddox had a stomach flu and an upper respiratory thing and was dehydrated. We couldn't get him to tolerate his feedings (kept throwing up). That is why we transferred to Children's on Feb 20.

They figured Maddox's stomach doesn't empty like it should, so they kept the tube that connects to his tummy open to drain, while feeding the formula into his tube that leads to his intestine. They also started a medication to help his stomach empty faster. He did great! We fed him with a faster rate, so he was only hooked up for 16 hours rather than 20-24. He stopped throwing up and we went home. He did great at home on Friday and Sat (Feb 24 and 25).

Sat night he kept waking up with stomach pains and they got worse, so we brought him to the ER and they diagnosed him with Clostridium Difficile. This is a colitis (inflammation of the colon) typically brought on by antibiotics (he had a pretty strong one while at the hospital in our home town).

It. Is. Nasty.

On Sunday afternoon Maddox started throwing up, the anti nausea med worked for about an hour. By around 9:30 Maddox started throwing up brown, coffe ground colored stuff and it was draining from his stomach tube (it was blood).

Yesterday and today we couldn't get him to tolerate his feedings, and he has lost weight, so we were admitted again.

They started him on his feeds on a little slower rate, and within 30 minutes he started throwing up. (just like at home). They used an anti nausea med and Benadryl and he still kept throwing up. So now he is hooked up to a suction thing that suctions the stuff out of his stomach. And he is finally sleeping and hasn't thrown up for 40 minutes.

That is where we are at. I know God is in control and He is taking care of Maddox, and at the same time, tonight I am more scared than I have been. I think it's the suction thing. My hope is that all these troubles help to lead the doctors to the cause of everything. I also got my period today, so that doesn't help.

I'll update tomorrow and have some pics on here as well. I just wanted to get everything down before I forgot.

New Hospital

Talk about a hospital visit from h---. Tonight was c-r-a-z-y.

We were discharged at 3:00 pm, ran home, packed and hit the road at 4:15. Craig stayed home to work, and the boys and I headed out of town.

Talk about sheer exhaustion. We arrived at Children's around 7:00 pm, unloaded the van, carried our bags in, picked up my badge and headed to the 6th floor (per our instructions), checked in only to hear "I don't see you in the system, let me call someone. Maddox then needed to poop, Mason needed to pee. We returned to the desk and I spelled our last name 8 times, Maddox had an accident, got him cleaned up, returned to the desk again with no answers. Then we settled in the family room, Mason with the iPad and Maddox with the large screen tv (have I ever mentioned how thankful I am to live in a digital age?).

After over an hour wait, they discovered we were supposed to be on the 5th floor. Once we were in our room, my cell phone rang. A woman said "is this Jolee? I am so and so, the nurse at Children's, where are you?". I replied, "oh, we have a room now, room 5132, we were on the wrong floor". There was a pause. "which Children's hospital are you at?"

It turns out our nurse accidentally set things up with a different hospital, but the doctor set things up with the hospital we were at (which was the right one).

While sitting around waiting for answers, I looked through our paperwork and it turns out the radiologist at the first hospital we were at diagnosed Maddox with early pneumonia. That was news to us. He was being treated with a strong antibiotic, but no one came out and said he had pneumonia. (an x ray here determined it is not pneumonia).

Maddox needed a new IV put in and a neb treatment, which is so traumatic for him and for me to watch. During the IV procedure, the fabulous nurse we had last time we were here walked around with Mason. She even took him into the "teen room", even though she had be explicitly told not to.

Then to top it off, our nurse gave me some bottom cleaning foam and super soft wipes for poor Maddox's bottom (he has the runs something fierce). I went to clean him up, he didn't want to, but he stuck his little bum in the air for me to take care of. The nurse exclaimed, in a horrified voice, "OH!! That is for when he goes to the bathroom! You don't clean him now".

The boys have been absolutely incredible though. They are amazing. Mason is pretty congested and I feel horrible about that. Hopefully he feels better quick. Maddox is doing well. A bit traumatized, but he still has his spunk and wit.

I am off to bed now.

Holy Hospital Batman!

4 nights. Tonight is our fourth night at the hospital. whew. As far a's hospital stays go, this one has been almost relaxing. At first I thought I was in denial, but then I realized just how worried I was about Maddox and how this has been a relief to have professionals around and to have other people see what we have been dealing with.




Our standard hospital picture (mason was even able to get in on it)---disregard how exhausted I look.


Mason is now getting a cold. I pray, pray, pray he does not get what Maddox had, especially with his mild asthma. (of course Mason is disgusted with his brother for getting him sick)




This is what Maddox looked like for almost a week. Definitely NOT The Maddox.


I think Mason was somewhat relieved he could be at the hospital with us during the day.



Strolling with Nana. They set off the alarms with his bracelet thingy. Sirens were sounding and lights were flashing and they couldn't turn it off right away. It reminded Maddox of Batman's alarm. He was a little disappointed when he realized he couldn't bust out of here.




Sweet, sweet Mason. I miss him. He's been with Nana and Auntie most of the time.




24 hours after IV fluids and antibiotics were started.




48 hours after IV fluids and antibiotics were started.




PlayStation2. Lego Star Wars.




Maddox drew a picture of Nurse Joanie. He drew another one and gave it to her. It's the first real person that he's drawn. I love it.




Half of the loot he has accumulated a's gifts for being in the hospital. I'm waiting for Mason to start telling us how ill he is.




His little IV hand. They just had to pull it out and give him a new one. Talk about a stink! His hand reeked from the plastic board under it.




All tuckered out after the new IV was put in. I detest seeing him in pain and having to go through all the pokes. He has been poked so much this week. But he holds his arms so still and follows the directions. He's a trooper.




Maddox took a picture of himself.


We may be discharged to the U of Mn Children's tomorrow to see if they can figure out what is going on with Maddox.

There is so much more to write, but I am tired.

I will say that until last night, we were the only family here. The only one! We had the royal treatment and had everything to ourselves, and it was oh-so quiet. Tonight there are 4 other families, so it is a hoppin' place. The nurses have all been fantastic and made these 4 nights as enjoyable as possible.