The Two Versions of a Hospital Stay

April 5th started out like any ordinary day.

Jaycee woke up once again with a junky cough that we had been treating with frequent breathing treatments. She had finished one course of steroids and antibiotics about a week prior for this same cough. I had checked Jaycee on her monitor that morning which showed her heart rate and oxygen saturations numbers where they had been running. I got the kids off to school and went to work for a few hours.

Before the school day would end, things would change drastically with Jaycee's breathing. Jaycee spent the next three nights in the hospital. It's hard to recount everything that transpired over that time. The hospital is able to condense the illness into just a few paragraphs in her thick medical chart.

Here's the hospital's version of that stay from her discharge report:

Here's the full story of what happened:

Jaycee's mother was driving to school to watch her son in a class program. Jaycee's teacher called with concerns about her breathing. Jaycee seemed tired and her oxygen saturation numbers (taken by Jaycee's portable monitor) was lower than the previous days. Jaycee's mother arrived at the school a few minutes later to check on her. Jaycee was given her inhaler again but her oxygen saturation numbers were still in the safe zone. Jaycee then vomited but otherwise seemed in no immediate danger.

School staff worked to clean up Jaycee while her mother attended her son's short program. About 20 minutes later, Jaycee's mother arrived back in her classroom to take her home. Jaycee's arms were splotchy and her lips were discolored. The monitor now showed Jaycee was having difficulty breathing and a third breathing treatment was completed at school. Jaycee then became incontinent.

Jaycee was taken to the emergency room by her teacher and her mother. Arrangements were made for Jaycee's brother before they left school. Initially, Jaycee's numbers looked better at the hospital. After some time, her heart rate and respiratory rate increased while her oxygen saturations started to decrease. Jaycee was placed on oxygen. An IV was placed, blood was drawn for labs, and a chest x-ray was taken. Jaycee continued to be incontinent, throwing up, and started to run a fever.

Jaycee's mother and teacher were informed that Jaycee was septic and would be transferred to a Children's hospital. Jaycee's mother was upset because Jaycee had been septic in 2013, which required a 4 week hospital stay and intubation to recover. IV antibiotics and steroids were started, fluid boluses were given as well as breathing treatments. Jaycee's father was contacted by phone of her change in status so that he could come straight to the hospital. Jaycee's parents immediately contacted people who would start praying for Jaycee.

Almost 2 hours later, the ambulance arrived to transport Jaycee. It had been delayed due to a heavy rainstorm. Jaycee's mother rode in the ambulance while her father drove the family's vehicle to the hospital.

Jaycee arrived at the pulmonary wing of the hospital around 9 pm. Her vital signs were much better but she still needed oxygen and frequent treatments. The doctors explained why they felt she was not septic and believed her symptoms were probably due to acute respiratory failure. However, if she did have sepsis, then her symptoms would return 24 hours after her antibiotics were first given. Jaycee's parents were hopeful but would feel more relieved after the 24 hour mark that came and went without a change in status.

Jaycee received breathing treatments and vest airway clearance round-the-clock during the admission. Jaycee had many desaturations the first night. She needed oxygen day and night initially but was able to be weaned off 24 hours prior to discharge. Jaycee did test positive for a cold virus but her chest x-ray was clear. Jaycee's parents stayed at the hospital and were involved in her care. Jaycee was discharged on April 8th on a long steroid wean and round-the-clock treatments.

***

The hospital's version remarks only on the major medical issues and interventions. My version acknowledges the impact on Jaycee and the people around her.

A hospital stay affects a family in many ways. My son suddenly found himself in his grandma's care. My husband and I felt the chaos of an unexpected admission and fear of what would happen to Jaycee. Jaycee was scared too and exhausted. Things didn't go back to normal immediately once we were all home.

A few days after leaving the hospital, Jaycee had to be coaxed out of our van for the follow up appointment with a local doctor. Even after she left the van, she was scared and reluctant to walk inside the clinic. I had to reassure her that nothing bad would happen today and we would go home right after the doctor saw her.

And so, there are two versions to every story. An unexpected health illness does more than just threatens a person's body. It disrupts lives. It causes emotional issues. It can separate families temporarily.

A hospital stay is much more than a few sentences in a patient's chart. It is part of a person's life story.

A Heart Surgery: Part 1

"I think your baby has a genetic issue, and I hear a heart murmur," stated a pediatrician just a few hours after Jaycee's birth in 2006.

I sat in my hospital bed trying to make the words match my view of my baby. I flash backed to ultrasounds and prenatal appointments. Nothing ever signaled trouble. What was going on?

The next day, I was seated in the NICU when the doctor told me that he was certain Jaycee had Down syndrome. Name an emotion; I felt it. Not only that, Jaycee looked "sick." She was on oxygen, monitors, and IVs.

Hours later, I walked into the NICU room to visit my baby. The cardiologists were in the middle of their testing. I took a seat away from the action and let them proceed. Some poor resident walked over to tell me that my precious baby had a large hole in her heart called a complete AV canal heart defect. There was a picture drawn out and descriptions about blood flowing the wrong way. More words about possible congestive heart failure and heart surgery. I started sobbing. The resident quickly walked away and clearly did not know how to deal with me.

A few days later, the team concluded that Jaycee was indeed in congestive heart failure. Three medications were started. Jaycee spent the first 10 days of her life in the NICU. Then we came home & the work began. I started my new role as a nurse.

At home, Jaycee was being woke up to feed every 2-3 hours around the clock. She NEVER cried for food, ever! She slept nearly all the time. Looking back, she was a sick baby. She was on digoxin, Lasix, and potassium. I remember one medication was 3x a day and one was 2x a day. They weren't all on the same schedule. We kept a book to log all the medications and feedings in order to keep it all straight. There was home nursing visits to monitor her heart. There were lots of doctor's appointments too.

There was so much going on. So many emotions to sort out. And I was completely exhausted. I have never in my life been that exhausted. There was no chance of her "sleeping through a night" because I had to wake her up to feed. Yes, I let a night or two slip when I was at my breaking point or slept through my alarm. But, she had to gain weight for surgery, and that was my only job. Nine pounds was the goal. Even with round the clock feedings, we ended up using higher calorie formula to bulk her up.

When she was 1 month old, we ended up back in the hospital due to dehydration. Jaycee was a poor feeder and the Lasix was making her lose fluids. When the cardiologist put her on an increased dose of Lasix shortly after she was discharged, I was at my wit's end. We sought a second opinion and found a great, new hospital and a different cardiologist, who changed all of her medications.

It's hard to have a baby who needs extra care and facing surgery. We hadn't really had time to get to know Jaycee, and the thought of surgery was scary. The time between her birth and the surgery can only be described as stressful, but that doesn't begin to describe it. There were calm and happy moments too, but lots of things to adjust to.

When she was 3 months old, she got to her goal weight, and surgery was scheduled. We got professional pictures made prior to the surgery, making sure that her chest was photographed. It would be the last pictures without her being scarred for the rest of her life.

We arrived at the hospital 1 day before the surgery for all the pre-operation tests and meetings. We were told all the things that could go wrong. I know why doctors have to tell you those things, but it makes you want to grab your baby and run out of there. On the surgery day, Jaycee was so happy. She was smiling and was so sweet. It made the last few hours with her fun. Then we said our good-byes. We had some tears and joined our friends and family in the waiting room. We've always been blessed with supportive people. We prayed, took communion, and tried to make small talk to pass the time.

Four hours later, the surgery was completed without any complications. A few hours later, we were allowed to go see Jaycee. Forget the NICU, now Jaycee looked "sick." She was hooked up to so many lines, tubes, and monitors. She was sedated and on a ventilator. We tried calmly talking to her but her heart rate went up. We had to simply look and wait.

Over the next few days, things slowly come off of Jaycee. The only thing she couldn't shake was her oxygen. She stayed in the hospital for 6 days. She was sore. We had to pick her up by scooping her (not by picking her up under her arms).

Jaycee came home on oxygen. There's a lot to say about oxygen use but maybe another post. When we got home, we had to clean her stitches on her chest. She couldn't be submerged in water for a short time. My nursing skills grew even though I really didn't want them too!

The first few weeks of recovery, we had to keep Jaycee isolated. But, before we knew it, she was ready to get back out to church and other public places with her oxygen tank in tow for the next three months.

In time, Jaycee's scar healed and it looked like an exclamation point on her chest. I could feel a bony growth on her sternum. You could see the "growth" too. The doctor told us it was calcium deposits that collected there due to the surgery and that we shouldn't be concerned. It did eventually even itself out and there's no longer a weird bump on her chest. Although for some time, it did have me worried.

Subsequent heart checks indicated Jaycee just had mild leaks and that surgery was a success! We were relieved that Jaycee's heart was fine, and this was all behind us. Or so we thought........

To be continued next week.............

A Special House Tour

Today, I'm taking you on a tour of my little house. My house has differences than yours possibly because I have a special purposed child living in mine.

 

This is the door from our house to our garage. A few months ago, I posted the stop sign on the door for Jaycee. Given the opportunity, Jaycee will run out the door and never look back. It's a safety issue that she doesn't seem to understand. After watching an episode of America's Super Nanny, which featured a boy with Down syndrome running out of a house multiple times a day, I copied the stop sign idea. The Super nanny's sign read: Stop. Ask first. My sign reads: Stop. Ask mom.

Did the sign work? Well now I tell Jaycee to open the door and go out to the van and she won't. She'll wait by the door until I open it. I'm not complaining. She's just doing what the sign says!







Welcome to our kitchen/pharmacy. This is where we draw up medicine, mix laxatives, and crush pills. Bi-pap parts, nebulizer masks, and syringes are all cleaned here too.



 Here's Jaycee taking a nebulizer treatment in our living room/treatment area. Yes, our floor is littered with toys thanks to my son. Throughout the house, you'll find random things that serve a therapeutic purpose. Hence, the red exercise ball in the background, which we used this summer for gross motor activities.

 Welcome to my bedroom. (And my husband's) The monitor is on every night. At 7 years old, we still have to use a baby monitor from time to time. It's jolting to hear "beep-beep-beep-beep" through the monitor which means she's having an apnea episode. Under our bed, we store oxygen bottles that Jaycee uses in respiratory emergencies. Where do people usually store 4 oxygen bottles in a small house anyway?

Here's a shot from Jaycee's room. Her bi-pap mask is hanging off the bed ready to use each night. In the corner, there's a giant oxygen machine. I hate this machine! I had to remove toys out of her room to make room for this machine. That seems unfair, I know! We rarely use this machine because we use the oxygen tanks. But, our supplier is required to have 2 forms of oxygen at our house so we always have a back up.

Finally, this is Jaycee's messy closet. We don't have really have many closets in our house, so excuse the clutter. There's an oxygen tank in the front ready for an emergency. The Tupperware drawers hold a bunch of miscellaneous medical supplies: stethoscopes, medicine, nasal cannulas, sensors for the oxygen saturation monitor, nebulizer parts, tape, bi-pap masks, etc. This thing is crammed full of stuff we need to keep around. You'll also see bed pads and night diapers in the closet too. Needless to say, this closet is always locked.

 

So there you have it! There's our special purposed house tour. Hope you enjoyed it!

Going to the hospital with my special purposed child

Three weeks ago, we brought Jaycee to the ER for her asthma. It was a short 2 day stay. She was discharged but never got 100% normal.

Two days ago....Jaycee obviously is having difficulty breathing. She is bent over, which is always the position she takes when she can't breathe, and her skin is very modeled. Breathing is labored. I hate being at home alone when this happens. But, it's 9 am so my husband and the close family members are at work. I'm trying to give her medicine, call the children's hospital, and hook her up to her oxygen saturation monitor all at the same time. Next, I roll out the oxygen tank just in case we need it. I start running around the house grabbing items she'll need in case she goes into the hospital. I'm tired and panicked. I can't think. Three weeks ago, I was fairly calm and level headed when I was doing this but today I'm not. My 3 year old son asks me to play with him and read to him. I gently tell him "not right now, sissy's sick." But I want to answer him harshly and tell him to go upstairs while I'm being panicked but I stop myself. It's not his fault. It's not Jaycee's fault either. I can't control what happens but I can control my reactions.

I load the kids, the oxygen tank and monitor, the bags, diapers, and miscellaneous items into the van in a rush. I leave the house a mess. There are clothes in the washer and in the dryer. I have clothes drying on the clothesline. I have bills that need to be paid and checks that need to go to the bank. But, in an instant the busyness of everyday life halts. The only thing that matters now is getting my sick little girl to the hospital as quick as I can.

I make the trip to the hospital. I don't get far when I have to pull over and put oxygen on her. It's just 1 liter though so this isn't too bad compared to other trips to the hospital. It takes an hour to get seen in the ER after we arrive. She is immediately put on 2 liters of oxygen. She hates the ER. She remembers it. She doesn't want to get into the bed. She wants to stay in the stroller and we let her for the moment. She is given lots of breathing treatments and an x-ray. She cries a lot and says "mama" when she's scared. It makes me feel good and sad at the same time to hear that. An IV is needed. There are 4 of us holding her down so a nurse can put it in. I have flashbacks of other moments like this. I always say I'm not going to help hold her down anymore but I always do. I at least feel better if it's my hands she feels on her and my face she can see telling her that things are ok.

Hours go by in the ER, 8 to be exact. ICU or the regular floor is being debated and no one can decide. Finally, they do and we head to the asthma floor on the hospital. Jaycee recognizes this place and feels totally comfortable here. There are several nurses and staff who have taken care of Jaycee here over 7 years. My adrenaline is gone. I'm tired now. I'm in disbelief that we are here again and at the same time not surprised at all we are here given her symptoms in the previous three days.

And now.....it's been almost 48 hours since all this started at the house. Barney is singing about butterflies while Jaycee's droopy eyes are glued to Barney's every move. A cannula in her nose is giving her a small amount of oxygen. A sensor on her toe lets me know how well she's breathing. She is still sick but getting better. This is our 13th stay in the hospital for an illness together. I count myself fortunate to have another day with her smile and love in my life. I hope this is the last trip to the hospital but I am doubtful that it will be. I have written up Psalm 27: 1 on our dry erase board (The Lord is the strength of my life). We can keep going through these illnesses and hospital stays knowing where our strength comes from.