****Warning...It's a long post***
Well, it happened...We were at Children's Hospital of Wisconsin for Mason's first of many (will be common with CF) hospitalizations from July 22nd to August 3rd. The one thing we heard over and over is that there were 10 other CF kids on the floor and he was by far the easiest and youngest! We thought we were there for more of a GI issue due to the multiple vomiting and coughing episodes daily, but it turns out it was a CF exacerbation. It was brought on by a staph infection in the lungs. As you know from before we were trying many different things to figure out what was going on. By the time he was admitted July 22nd he had lost enough weight to be back to where he weighed almost 3 months prior...and for a little guy that's a lot. Since the end of May, Mason had been vomiting large amounts, many times a day. We were pulling our hair out in frustration. We were seeing the GI doc, there were talks of feeding tubes, he had an EGD, he had a Bronchoscopy, we tried liquid steroids, inhaled steroids, different formula, different mixtures of formula, 2 different inhaled medications, went from thinking it was a milk allergy to reflux, to worsening reflux. It was a stressful time. By the time I got the call from the CF clinic that they wanted to admit him, i personally felt so lost. I was actually relieved when they wanted to admit him because I felt so lost.
"You're thinking of doing what to me now?" July 18th, 2011
trying inhaled medications...trying to avoid the hospital
a one month supply of two medications, but we only used it for 3 days before we got the call to bring him in to be hospitalized.
What do you pack knowing you are going to be there for 2 weeks? It took us 4 hours to try and pack...Mason of course was happy as a clam!
We were told to go through the E.R. first because there was a concern he was dehydrated. So we spent 3 1/2 hours here telling our "story" multiple times (i think 6 in total...should have just written it down and handed it to them!), 3 chest x-rays, IV fluids, and getting checked in.
Got our IV and waiting for our room on the 11th floor. Mason received IV antibiotics every 6 hours round the clock during our stay. Let's also just say I still hear the beeping of that damn thing in my sleep!
Welcome to our "suite" for the next 13 days.
We brought the "cage" on the right hand side.
Pretty spacious for a hospital room for an 11th month old.
Why yes that is a scale in the bathroom. We had to weigh every. single. diaper. so they could keep track of his "output." Got to be a game after awhile to get the highest number.
The oh so comfortable pull out couch!
Mason's sleeping/playing/diaper changing quarters.
The view was nice. That is Froedert Hospital if you're wondering.
The sad part was seeing this land and take off from our room at least 5-6 times a day. I was surprised at how busy it was.
The board we used to leave notes for the nurses and remind us of meds/schedules
Let me take the time to say that a CF hospitalization is no walk in the park. You are there to work, not rest and relax while they care for you. I honestly thought I would also catch up on some sleep, and other things...boy was I wrong and I wasn't even the patient! He had a packed schedule from 7am until 8:30pm.
Mommy laughed when they brought in my 1980's McDonald's high chair. Seriously, though, we were in the brand new building at Children's and they have these old high chairs! We had a good laugh.
Get me more room to play than my crib or I will continue to annoy you guys!
This is sooo much better and I don't touch the Nasty floor!
Daddy thinks it's pretty nice too!
Paging Dr. Derek!
This is what we used for room service for ourselves. We can order off the menu but were warned by the nurse that they only make the food age specific. Needless to say we did not want pureed hamburgers!
Mason's 1st of 3 IV's. The IV pump was beeping and I was trying to find the blockage. I checked the whole line and saw this when I reached his hand. Yikes! The part that is sticking up pointing towards the 2 o'clock hour should be nicely placed under the white tape over his fingers. They were able to save it for a few days. They had to hold him down kicking and screaming two more times to place an IV. after the 3rd one fell out after just 24 hours in, I said no more. Once they agreed to that by switching to oral antibiotics, I pushed to discharge home...which we did 2 days later.
Since Mason was still having some vomiting during this hospital stay (although it greatly decreased once we were admitted and started on IV antibiotics) a swallow study was done to rule out aspiration concerns. Basically, what that means is to make sure he is swallowing properly and no liquids/foods are going down the wrong tube.
Because Mason needs to be in isolation to protect himself from everyone else's bugs, he is supposed to wear a mask...this is lasted long enough for me to snap a picture...try to reason with an 11 month old about a face mask! As a side note, when ever anyone was to come into Mason's room (staff) they had to gown up, glove up, and place a mask on. This is how it will be for any hospitalization because he is susceptible to other bugs.
This was the chair Mason sat in for the test. I had two layers of isolation gowns and a heavy lead apron on since I got to feed him the test food/drink.
A shot of Mason's neck and swallow. The results we good. He had only one swallow that started to go down the wrong tube but he was able to self correct. He passed with no further intervention needed.
All done and awaiting "transport" back to our room. Notice his chart on the IV pole? Not gonna say if a curious mama bear took a sneak peek. :)
The Vest: Mason had been getting manual CPT since he was only a few months old. What COT does is shake or pound the mucus loose in the lungs so that Mason can cough it out. As with most CF parent's in the USA I can only assume we all are anxiously awaiting the time our little one is able to wear The Vest. This is a machine and vest that are literally a life saver and arm saver. While in the Hospital Mason's CPT schedule was 4 times a day. So when one of the Respritory Therapists suggested we try the Vest, I was over the moon. We had been asking if he was big enough for it for some time. Sure enough he was just big enough and for the remainder of the stay it was a wait and see if he could handle the shaking...as you can see, we went home with one!
Mason's first fitting of the Vest...as you can see he is thrilled!
"hmm. this is different. I am not so sure about this."
must not have been too bad...put him to sleep
Speaking of sleeping...
We Skyped with our peeps to keep busy
Mason is a good alarm clock! :)
We got lots of snuggle time in, even in the window sill.
This little guy is my Hero! For everything he endures, there is that amazing smile.
I liked playing in the window sill when they detached me from my IV for a few hours...
It appears I don't have my fear of heights like my daddy.
I was feeling gansta' one day
"Hi, My name is Mason. If you are my nurse today, please be warned that I will be wrapped around your finger. Thank you."
"Give me some more Yogurt!"
Our favorite nurse, Mallory, showed Mason one expensive toy...the thermometer.
"My last IV fell out so I could wear my clothes again and the docs agreed that I could go home tomorrow! Yippie!!"
Playing while I wait for my discharge papers!
We are FREE!!!!!!!!!
Trip #1 of 2 to the car...amazing what we accumulated in 13 days. In the words of other CF family we know, "we pack like we are going on vacation...we bring the whole house."
Again, to protect him from other people's germs...not sure if it even ever got fully on!
This was our prize for staying in the hospital for 13 days. It is now the second most expensive thing Derek and I own...an $18,000 machine to shake the mucus from Mason's lungs. He will have this for the rest of his life.
He actually has never really had a problem wearing it...we have continued the tradition we started in the hospital...watching Mickey Mouse Clubhouse during the 20 min Vest time twice a day.
So the end results? Mason was deemed to have had a CF exacerbation. He has the bacteria staph growing in his lungs. Now this is commonplace for someone with CF, and we knew it would come at some point, but had hoped it would come much later. He will never get rid of it. He is now considered colonized. The mucus in his lungs makes a great host for any bacteria and once it makes a home there it is near impossible to eradicate it because the mucus us too thick. This is hard part because there is now this viscous cycle we fight daily to help slow down the damage to his precious lungs.
