When Bubby Visits ICU

Whenever Jaycee is in the hospital, we have always brought Elijah, who we call Bubby, in for visits. We have several reasons for doing this: we want him to know why we aren't home with him, hospitals are part of Jaycee's life so he needs to get use to them, and we miss him & want to see him.

My husband and I have tried to set some ground rules in order to bring 5 year old Elijah to visit his sister without scaring him. He doesn't visit if Jaycee is in any danger of something going wrong that day.I don't want him there on a day she is being intubated seeing me cry and getting worked up. He comes after the storm. That being said, if he visits and seems uncomfortable, he gets to leave the room. We do not force him to look at her or touch her if he does not want to. We try not to have him at the hospital too much. It is boring on a good day and there's not much to do here if you are well. But we are blessed that this hospital has a playroom/daycare for siblings open a few hours a day, so he has somewhere fun to go. And as he has gotten older, we give him opportunities to ask questions about things on Jaycee or about her.

So as I sit here in the intensive care unit for 16th day, I am reflecting on Elijah's visits this time. This hospital stay, like so many others, began with us leaving at midnight while he slept in his bed. We woke up poor grandpa to come stay with him so he wouldn't be jarred awake with bad news. Shortly after admission, Jaycee ended up in ICU because she needed to be on a bipap machine constantly due to the rhinovirus and pneumonia attacking her lungs. When that wasn't doing the job, Jaycee was intubated for over a week. Now, she is still recovering but doing much better.

Elijah had his first visit on this admission when Jaycee was stable on the ventilator. His grandparents brought him over for a short visit. He greeted me with hugs and small talk. Then I showed him his sissy. Bubby was prompted to ask any question he wanted.

The monitor, as always, caught his eye. He asked me what all the numbers meant, which I explained one by one. Then he asked me what a few of the IV lines were. Since he didn't mention her breathing tube, I told her how that was helping Jaycee breathe. Then he said he had 1 more question. "What's those scissors for on her bed?"

The nurse said, "We call those gizmos. Want to see one?"

Elijah happily takes the prize and starts hooking and unhooking them to objects. That was that.

Later, he asked to sit in bed with Jaycee and watch tv with her, which is what they do at home. I put him at the feet of her bed and positioned a pillow between him and her so he had a visual boundary on where he couldn't cross. It was great to see my kids in close proximity once again.

But it was the elevator ride that sparked the most interesting conversation. He read the list of floors, what was on each, and asked what some of them meant. Then, he asked, "What does the PICU mean?"

"It's the pediatric intensive care unit. That's where the kids that are really, really sick are."

Immediately he said, "But that is where Jaycee is. I didn't know she was really, really sick. You never told me!"

"Sorry. I just thought you knew that because Jaycee had a bunch of tubes and wires in her. But anytime Jaycee is in the ICU, she is really sick!"

His voice sounding concerned then asks, "Why does she get so sick? I never have to go to the children's hospital."

That's the million dollar question. I do my best to reassure him by telling him all the things I try to tell myself when I am scared about Jaycee. I also remind him that Jaycee was born with sick lungs (asthma, obstructive sleep apnea) so colds are much harder on her than any of us.

When the questions stop and we are back standing by Jaycee's bed, he talks to his sister. In a soft voice he tells Jaycee he has missed her and that he wants her to feel better. He holds her hand and encourages her the only way a bubby can. And even though this is a very sweet moment, I hope we never, ever relive this again.

My Privacy & Other Things I Miss in the Hospital

I'm still in the intensive care unit with my daughter. I have practically lived here for the past 11 days. Hospital life is different from regular life.

Here are some simple things I miss in no particular order while I'm in the hospital with Jaycee:
1. Walking around barefoot- In ICU you are required to wear shoes at all times. At bedtime, I can get by with just socks. But my feet get tired of wearing shoes for hours and hours.

2. Taking a shower in a clean bathroom- There's a lovely parent lounge shower here. I'm grateful for it but you can imagine the state of a bathroom that multiple people use. I just try to get in and out as quick as possible and not think about it.

3. Performing Jaycee's care- At home, I help Jaycee get dressed, do her medical care, and do all the little things for her. Here, I am allowed to help move her and assist with diapering. It is an odd feeling just watching nurses do some of the things I normally do while I sit on the sidelines. But right now, the sidelines are where I belong.

4. Having the ability to fix my hair- My curly, frizzy hair is hard to manage under the best of circumstances. Here, I don't have access to all my styling products or straightener. I don't have the energy to use them if I did have them anyway. I pretty much wear my hair in a
pony tail most of the time.

5. Having control over my daily schedule- In the ICU, you are suppose to arrive prior to 730 am when rounds begin. So breakfast and all the morning stuff has to be done before that. Then my husband and I wait for the doctors to come by and round on Jaycee. They could come any time between 730 and 11. So we are forced to wait. The rest of the day is all dependant on Jaycee and activity in the hall. Meals, bathroom breaks, and small breaks outside the room all depend on if Jaycee is calm and stable. If some other child is having an emergent problem, the unit may be closed making it difficult to get back in if you leave.

6. A bed to sleep in- One parent is allowed to sleep in Jaycee's room. There is a chair that pulls into a bed. Really it isn't too bad but I miss a nice comfy mattress with my own fluffy pillows.

7. Privacy- In the ICU, the people need the be able to see into Jaycee's room at any time. So her door is always slightly opened. The door is glass anyway so it doesn't matter if it is open or not. Staff are often in and out of her room doing their necessary duties. If you need to have a good cry or make a phone call, there is not a good place for that privacy unless the parent lounge is empty.

8. Being able to see my son everyday- I miss my son who is at home being well cared for by family. He comes over for occasional visits right now. We talk on the phone but it is hard being away from him.

9. Having a home cooked meal- Eating in the cafeteria and at local restaurants gets old quick. I miss our meals together as a family even if they are just hamburger helper occasionally.

10. A dark room- Because this is the ICU, the rooms and halls are never completely dark. The parent lounge is never dark either due to problems with theft, so there's no darkness for good, solid sleep unless we can bravely leave the hospital for a few hours.

11. Getting love from Jaycee- Since she's sedated and has a breathing tube down her throat, I really miss her hugs, kisses, and cuddles I normally get multiple times a day. I miss hearing her attempt at 'love you momma.' For now, we have to settle for holding hands.

The days are long here with many things that aren't ideal but I keep reminding myself it's only temporary. This too shall pass. And I hope it passes soon!

Life After a Near Miss

About 1.5 years ago, Jaycee was fighting for her life.

It started in September 2013. (I blogged during that time, so if you want to know what I was thinking and experiencing, look up those dates on here.) I took Jaycee to the emergency room for breathing difficulties. She had already been admitted in June, July, and August that year already for breathing issues. So, Jaycee was on a bad streak. The emergency room led to the Pediatric Intensive Care Unit (PICU).

First, she was diagnosed with rhinovirus, which is basically a cold virus, and pneumonia requiring oxygen support. Then without warning, her blood pressure dropped. That was beginning of a 4 week nightmare for us. Over time, we learned that septic shock, acute respiratory distress syndrome (ARDS), and a cyst in her lung all contributed to her critical condition.

Jaycee spent three weeks on a ventilator which also meant she was sedated during that time. There were brief moments when Jaycee came to, but for weeks we watched her sleep. She was fed through a NG tube. Therapists came to move her arms and legs to help keep some muscle tone while she slept.

Things were touchy for weeks. Her blood pressure would be too low; other times it would be too high. Her oxygen saturations and amount of ventilator support was changing often.

There were many scary moments. Moments that caused me cry uncontrollably in front of other parents in  hospital hallways or in the family lounges, which is something I can normally hold inside until I'm alone in a hotel room or bathroom. The moment the doctors gave me the "we are doing our best but she may not make it" speech, offering a clergy and to call family in for us will stay with me forever.

Have I made the point that it was a bad situation?

But Jaycee miraculously recovered, and it was so amazing. We felt our prayers were answered because we did pray and pray for her to recover.

Jaycee left the hospital without any oxygen support but on a lot of medications and with extremely weakened muscles. Jaycee came home wheelchair bound unable to sit up unsupported let alone walk. My husband and a few friends built a temporary wheelchair ramp on to the house. Due to her weakness, Jaycee slept with her mattress on the floor since she couldn't get into her bed, had to have sponge baths, couldn't attend school full time for a few months, and did a couple of months of outpatient rehabilitation. The recovery was a family effort, and it did take almost 10 months for Jaycee to fully recover and get every little skill back.

Having a child nearly die changes your life and attitude as a mother. It is a wake up call as you realize that there is no guarantee for the future. As a result, I have changed. How can you go through something like that and not be changed?

Here's some things about myself that have changed since Jaycee's near miss:

• Saturdays are more relaxing. I always felt bad about allowing Jaycee watch movies all day (her favorite activity), so I made sure Jaycee painted or played with play-doh instead. I ruined her poor Saturday by making her do kid activities that she liked but didn't love. Now, I ask her if she wants to do it. If she says no, then I don't make her do it. I let her do what she wants which usually involves hours of movies.
• I like to make strong memories. It's not that I didn't try before but I'm more conscious of some things. If an opportunity comes up, my husband and I consider how quickly it will come up again and how enjoyable it will be for Jaycee. Like, we made sure Jaycee saw the ocean when we were on her Make-A-Wish trip. We purchased a camper last year in hopes that we can start to make new family memories too.
• There's just some things I don't care about anymore. I don't care how many sight words Jaycee knows or how far she can count. Don't get me wrong, I totally celebrate when she learns something new in school. But I don't sweat it anymore if she can't learn something. Jaycee's health and happiness are way more of a concern of mine than her educational status. (Sorry teachers!)
• I have to take more time out for myself. Since Jaycee's illness, twice daily airway clearance was added. Then more daily breathing treatments were added. Shoe orthotics were needed due to her muscle tone change affecting her feet. Then weekly bleach baths were necessary to combat a staph infection that will most likely never go away. The number of specialists Jaycee sees has increased by three, which means more trips to doctors. You get the idea; her care needs have always been high but the list has grown longer since that major illness. This means I really have to help myself. If I'm tired, I try to find a way to get extra rest. If Jaycee is at school, I try to carve out a few minutes of time at home with no chores for me to relax. Honestly, relaxing is hard for me when I have so many responsibilities but it's necessary for me to stay on top of everything.   

There are other things have happened as a result of her near miss. We felt strongly about getting Jaycee baptized, which happened last fall. We took in a stray cat to allow the kids to have their first pet. That cat had kittens allowing us to see Jaycee experience that too.

Each day with Jaycee feels like a gift. We feel so fortunate that God helped her pull through that illness and that she is still here being a part of our family!

A Hospital Veteran

Well, the rhinovirus struck Jaycee again. For the 4th time in 12 months, the virus has sent Jaycee to the hospital. Whenever we are in the hospital, we have roommates. It's inevitable unless we are lucky enough to get that rare private room. Some of the roommates have never been in the hospital before or maybe just once or twice before. Some are scared. Some are hyper. Some are rude...staying up late at night with the television on or talking on the phone. Most of these roommates come in and are gone in a day or two. I could go one and on about roommates, but I will spare you.

Our stays with Jaycee in the hospital are different from these newbies. Us, we are veterans. Counting surgeries and illness admissions, we have been in well over 20 times. We know when to truly be scared because we have many, many experiences to draw from. We don't have to ask simple things like where to get towels or directions to the nearest hotel. We know our hospital well.

I can get a bad attitude in the hospital. I get jealous of people who are one time hospital admitters. I get upset when they call family and remark about their very sick child who isn't even on oxygen or an IV and who end up going home the next day. I appreciate their emotions and concerns but I'm jealous that their sick child is in a far different category from my sick child who is getting frequent albuterol treatments, frequent airway clearance therapy, on oxygen, on bi-pap at night, etc.

I get upset when people come in for one night in the hospital and complain about how they want to go home and how tired they are. Again, I understand what they are saying. But, when you have been in for days or weeks, then you understand what exhaustion from a hospital feels like. You really miss home and yearn to be in your own bed, use your own shower, and have your family together.

But then there are other veterans I come across in the hospital, the ones who have been here dozens of times too. They remind me that Jaycee isn't the only child in this area that is sick time and time again. I feel less alone when I hear their stories. But at the same time, I feel for them because I know some of what their life must be like. I respect these families who have to juggle illnesses, the daily care of their child on a "healthy" day, and all the regular daily life responsibilities. I learn from these people. I can talk to these people. Some of these veteran children and their families make our situation look good. They help me appreciate where I'm at in life and help me to not take for granted some of the things that are right with Jaycee's health.

So at the end of another week long hospital admission, I have to say that I'm still trying to keep my attitude in check. Maybe one day, I'll get it right.

Hospital Emotions

Every area of the hospital has a different feel for me. The emergency room is a mixture of relief that we arrived at the hospital in time and stress as we await initial testing and diagnostic work up. The regular hospital floors generally have a feeling of calmness with a mild amount of stress. On the floor, there are periods of happiness that things are improving or sadness that the healing is slow but these are not intense feelings. Even going to the hospital for a doctor's appointment has it's own feel. The feeling is one of tolerance in being in a place with so many bad memories but also joy that there is no "danger" factor in the simple clinic visit.

The I.C.U. is the place with the strongest feelings and most negative conations for me. For 8 days, Jaycee was recently in the intensive care unit (I.C.U.) due to complications from a pneumonia and the rhino virus. Jaycee has been in I.C.U. 4 times now for breathing issues like pneumonia and a few other times for surgery recovery. The I.C.U. is known for things going from calm and stable to chaos in a moment without warning. The worst day for us with this admission was day one when Jaycee's breathing got so bad that a ventilator was being discussed. Fortunately, she improved but needed bi-pap support for several days.

There were calm moments for us as things slowly improved for Jaycee but we were well aware of heartbreak and bad events happening around us. When a large group of the I.C.U. team gathers outside a room, I get nervous for the child and the family. We have been that room before where the team congregates and makes a plan to adjust for the latest hiccup. As I sat in the hospital room, my mind couldn't help but recall the horrible, scary time for us in I.C.U. last fall. I thought about how Jaycee's blood pressure crashed and sent her spiraling downhill so quickly. I thought about my many breakdowns in the room, the hall, and the parent lounge. I thought of the uncertainty and the most horrific events in that stay that still haunt and affect me now. I thought I was losing her. Months later, I'm 9 beds away from where all that activity happened. I'm in another serious situation with my daughter, and I'm helpless again. I'm encountering some of the amazing nurses and doctors that helped her the last time. I'm grateful for them but at the same time, I don't want to see them again. I want to forget about that time in Jaycee's life when I wondered if she'd make it back home.

The I.C.U. is scary. Until the illness hits its worst point, there's uncertainty, worry, stress, panic, and fear. There's a reassurance that there are people around who know what to do, but also the realization that not every child pulls through every time. We have walked by rooms full of family members saying good-bye to their child. It's awful. It's intense. It's your worst fears of a mother being thrown in your face to deal with.

The best thing about the I.C.U. is when your child is deemed stable and well enough to leave, exiting those double doors hoping never to have a reason to walk through them again. I left I.C.U. happy that Jaycee survived, was improving, and on her way to recovery. But I also left with more emotional baggage, worries about the future, and fears about how this illness will affect her health in the near future.

When things go wrong\I.c.u.

There are times when Jaycee is sick with a cold that causes me to be nervous. Nervous that she will get worse. Nervous that she will end up in the hospital again. I find myself pacing the floors, checking Jaycee with the monitor frequently, and just feeling more stressed. I worry she will get sick and things will go horribly wrong like they did last year. But, for 8 months Jaycee has stayed out of the hospital. She has been sick but I was able to treat her at home. It has been nice. Still, during times of illnesses my guard has never went down, with thoughts drifting back to last fall when Jaycee was on a ventilator for three weeks.

Sometimes no matter how much I try, things can go wrong quickly. There has been a perfect storm of bad things happening that ended with Jaycee back in the ICU currently. First, it started with a trip to the dentist to get 4 teeth pulled. That led to Jaycee drooling profusely and not being able to control her saliva. Her numbness also led to her severely biting her lip. Then, after we got home from the dentist. She was wheezing, which I assume is from the gas they gave her. The next day, she's still wheezing. By that night, a cold seems to be developing. The next morning, it is clear that something has settled into her chest. In less than 48 hours, Jaycee went from being happy and fine to being driven to the hospital by us. I didn't even have time to panic or pace the floors or wonder how this will all play out because it happened so fast.

I was happy when the ride was over and we were in the emergency room. My role as nurse was now going to be played by a real one who knows what they are doing. Hours pass in the emergency room and Jaycee only gets worse. She was sent to the intensive care unit and went on a bi-pap machine full time. Diagnosis: rhinovirus (3rd time positive for it in the hospital) and pneumonia (3rd time this year)

It is scary being in this place again that I have tried to forget about since her time here last year. If you find yourself here once you pray you are never here again. it is draining. I don't want my little girl to suffer and be this sick. And when she almost had to be intubated again a few days again I thought I was going to be physically sick. Fortunately it didn't get that bad.

So we sit in icu another day waiting for her body to heal and hoping that day comes quickly.