Scariest day of my life...

It was Saturday morning almost 2 weeks ago at 5am. I was curled up trying to stop crying on a pull out chair. Not a sofa....but a chair. That's what you get in most hospital rooms. It was my 3rd hospital room that day and in a few minutes I would get my 4th.

Friday morning Jesse was coughing. She has been coughing for about a month. Especially at night. A common sign of asthma. It started with her bronchitis and it was starting to remind me of her hospital visit in December. It was constant and the breathing machine was not helping her at all.

Most people may be wondering what a breathing machine is. Well....that's probably not what it is really called but what I call it. It's a small machine that has a dinosaur mask at the end of it that small kids with asthma or respiratory issues use to get inhaled meds.

After the hand incident I had yet to follow up about why we went to the hospital in the first place. They won't usually diagnose someone with asthma until they have displayed the symptoms for 2 years, because it's a chronic condition. Ron has asthma and had it bad as a child, so we kinda thought that's what she has. So, we needed to go to a specialist and have them look at her and see what our steps would be.

That all got put in fast motion a few weeks ago......

Back to Friday..................Her coughing got very repetitive and she was trying to catch her breath. What the machine does is open her airways making it easier to breathe and lessens the cough, but we weren't having any luck with it. The day before...she was sneezing all day, which dawned on me that she probably had a cold. Kind of the same way the other incident started.....being sick.

I called her pedi, and after a few calls the nurse suggested I go to Children's to have her looked at. I called Ronald and got prepared for the 30 minute drive with a child who is having a hard time breathing. She wasn't too bad in the beginning, but progressively got worse. I decided to detour to a hospital in Arlington, which I do not recommend anyone going to.

I bring Jesse in and this was our conversation...
(ALL WHILE JESSE IS COUGHING AND NOT BREATHING WELL)

Me: I need to see a dr.
Receptionist: What is it regarding?
Me: My daughter is having trouble getting air in.
Receptionist: Well I'll need you to sign in.
Me: Really???
Receptionist: Yes
Me: Holds Jesse while fills out the tiniest piece of paper against a wall
Receptionist: I'll also need your ID and insurance
Me:It's in the diaper bag in the car
Receptionist: Well, we usually don't like to bring patients back before we have that info
Me: I NEED TO GET MY DAUGHTER'S OXYGEN TESTED NOW!! SHE HAS A HISTORY OF RESPIRATORY ISSUES!!

That got me back.....

They did a strong breathing treatment on her and gave her a steroid shot. She started to calm down and got to where she was only coughing a little. They surprisingly sent us on our way like the small hospital did last time.

We got home and it started up again. Ronald was on his way home and I said I think we need to go to Children's. It seemed like forever till he got there.

(I know now that if it gets that bad, to call for an ambulance)

We left about 5pm, went about 90mph and the ER took us back fairly quickly. I tried not to tear up watching her so uncomfortable. She puked on me in the info area from coughing so hard.

We got to a room where there 2 other families. Busy night at the ER.

They said she didn't seem too bad and were actually going to send us home after some breathing treatments. We pressed and told them we wanted to stay the night. Her oxygen level started to drop and they said they would send us to a room. They put her on oxygen and at midnight we went upstairs.

She was really miserable most of the time. The albuterol makes her jittery and with the cold and coughing she was upset. They set us up to do the breathing machine every 2 hours. It became apparent that we needed it more often.

At about 6am she was really struggling to breathe. She was working so hard and the 2 dr's said they were thinking about admitting her to the ICU. It was so painful to watch Jesse. Her abdomen was moving in and out so deep and fast. You could see her ribs each time she took a breath. Ron and I were stressed and tired from holding her all night and watching her cry. I told them if they were gonna do it, we needed to do it now.

They called an emergency medical team to our room. It was as if the flood gates of drs and nurses opened. They were coming off the elevators, out of the stairwell, down the halls.....everywhere!! About 20 of them showed from ICU and the ER I think.

They also had a few ladies there that I think were social workers. I think their job was to get me to calm down and talk and not freak out. I stayed out in the hall and Ron was in the room with her. In my mind I said it would be best to stay out in the hallway so that they could help Jesse without me being in the way. That's what I said, but I think it was too difficult for me to see her like that.

I honestly didn't know what was going to happen. I knew this was serious and in the room I could hear them yelling out things and making a plan. I heard them yelling out for something in a crash cart and that scared me. Then I heard them yell for something that I'll never forget.

A nurse asked for the chaplain to be called.

My eyes got big and suddenly it got so much more serious. I started to cry louder and a nurse told me it was just for support and for me to have someone to talk to. I didn't know if she was being truthful or just trying to pacify me.

There was a very dark skinned....older woman with what sounded like a Jamaican accent who had been there when we checked in and did Jesse's weight and height. She saw me and grabbed me and in a very motherly way and held me very tight. She patted my back and very loudly and dramatically told me everything would be ok. In any other circumstance it would have seemed very strange....but in that moment it was very comforting.

I saw the chaplain coming down the hallway and obviously he knew the crying woman was the mom. I'm guessing that they have to be very sensitive and respectful in how to approach. Parents may be athiests...agnostics....or not want to talk to a stranger. We were having a bit of small talk about Jesse and then over the entire hospital intercom they asked for a chaplain to come to the phone stat!! He excused himself and walked hurriedly to the nurses station and took the call. I figured there was a very serious situation he needed to go to. He came back to me and said to someone...

"They were making sure I was here"

My heart sank a little deeper and I asked him to pray for Jesse.

Ron came out to the hallway with his hands on his head like he knew there was nothing he could do. I hugged him and he hugged me. He's so strong, but when there is nothing you can do it makes you helpless.

We both walked up and down the hall knowing they were doing everything they could do for her. They told us they were going to move her so we moved to the side so they could all come out. It was like a clown car. All these people came out of the tiny room and wheeled her upstairs. There was a nurse holding her as they went down the hallway. She looked out of it and was breathing so hard. We gathered our things and someone took us up a regular elevator to ICU.

The social worker and chaplain went up with us to the ICU and stayed with us for a bit. The room was HUGE ...and right in front of the nurses station. Everyone was wearing masks and gowns and they told us we could go in there if we would like, but would need to wear masks and a gown. We later asked if that was for her protection or ours. They said it's for both. They said until they were sure what she had, they need to treat as a virus and protect Jesse and other patients.

It was so hard to look at her breathing so heavy. Her chest and abdomen were working so fast. As soon as we got in there a Dr. started talking to us. She said that she wanted us to be prepared for anything they might have to do. They were going to put this head mask over basically her entire face and it would not breathe for her....but assist her. Their fear was that her little body would start to get too tired and give out. In that case, it would breathe for her if she stopped....but until then...they said it would just help her.

She also said, that if they didn't see much improvement, that they would need to intubate her so they could have total control over her actions and have a breathing tube in her. My mind started racing and I was afraid to ask about the complications and the risks. I just knew that all these people were doing everything they could to help her.

Throughout the day we took turns holding her. We would both cry off and on just looking at her. I tried to be strong, but I found myself preparing myself to live without her. The emergency encounter had shaken me and I realized how close everything came to changing. My family came up, but Jesse was hell bent on no one holding her but Ron or I. My brother and his girlfriend brought up food and it reminded me how much you need people. Even though I wasn't hungry it was good to distract myself and be away from the room.

Ron wouldn't leave much so I thought I would go get him dinner from the cafeteria. I have to say that Cook's has much better food than Children's. I opted to go for the packaged sushi. I told Ron to go eat it and he finally did. This should have been a nice break for him, but unfortunately I bought sushi with shell fish in it. He has a shellfish allergy. He had to take 2 benadryl and hope that it wouldn't be too bad. The good part is that we were already at a hospital and he got a little sleep.

I was holding her when the dr. came in to talk about her progress. He said that she had not progressed much but that at least she was stable. Her blood oxygen had not changed and that was a bit of a concern. He said if she could make a turn for the better that he thought she might improve quicker. He was not very forthcoming with any optimism...but I asked him if he thought she was going to be ok and he said yes.

Ronald relieved me at I about 3 and I went where he had been sleeping in the family waiting room. When I got up her mask was off. Wow!!!! They had put on her smaller mask with the dinosaur on it that had the albuterol running in it. She was off oxygen and since I had been asleep....had really been making good progress. Her heart rate was still high at about 180 but some of that was due to the albuterol. She was also still breathing hard, but you could tell it was a lot better. I was very hopeful and things were starting to look good!!!

We were starting to feel like we were out of the woods but the looming thought of not wanting to end up here again made us persistent to get answers to not be here again.

They are treating her her as an asthmatic and we were given a plan to try to regulate it. I am also fairly convinced that her triggers are getting sick/cold...and also her crying/emotionally immaturity contribute to it and it just keeps her from catching her breath. Her blood did indicate that she had rhino virus - a common cold.

They released us last Tuesday and we have only made 2 trips out with plenty of hand washing and antibacterial wipes!!

We are hoping this might be something she outgrows as she gets older and possibly just to be really cautious about for the next few winters. As of now though, no activities with other children until we have a better handle on everything. Lots and lots of baby-mommy time!!

So far so good though and her night cough is completely gone which means more sleep for everyone!!! We are scheduled to see a pulmonologist.....an allergist .....AND a plastic surgeon in the next few weeks. I will let everyone know how it goes...but we are just so happy to see her walking around and breathing fine. Every time she coughs or sneezes my heart skips a beat, but I hope that will lessen with time.

pt 2. Jesse Hospital (warning graphic pics)

I rubbed Jesse's back and over to her shoulder.....I immediately looked up and said to the nurse..

WHAT IS THIS???

Her shoulder felt like she had an adult prosthesis on. It was the size as mine and was as hard. I cautiously felt her arm down and it was as if I was touching a foreign object.

I remember nurses coming in and out and I know they knew immediately what happened. They started taking off the gauze around her wrist/arm. They call it a "no-no" and it's a wrap they put around her IV to keep young children from messing with it. If they do there is the chance for the fluid that would be going into her vein, to go into her arm tissue.

She struggled while they unwrapped the velcro cast and pulled out her IV. As soon as they were done she put her head on my chest and just crashed. Jesse fell so sound asleep and got so still that I kept checking to see if she was breathing.

They elevated her hand over my shoulder and put warm compresses around her arm. I glanced down to her hand and started to hyperventilate. Ron told me to breathe deep and got me water. From the tips of her fingers to past her shoulder.....was so completely tight and bloated. It was grotesque. (The pic does not show completely just how big her arm was...but you can see as it goes up how large it is for a 10 month old)

They called for a dr. and told us he was on his way. We were told the only thing we could do right then was to try to keep her arm up so the body could absorb the fluid. She had cuts in her arm where the tape was from the pressure, and also the natural creasing at her wrist and elbow.

We immediately wondered how could we not have known?? The whole night....she was arching her back and raising her arm, trying to tell us......and we didn't do anything.

We soon found out, this was hardly our fault. Protocol is to check a child's IV every other hour. We've since been told that for a baby, every hour because they are constantly moving about.

The dr. came and said it would be a wait and see approach. There was not much they could do about it now and the damage would be unknown. There was something called compartmentalizing but they were going to hold off on it for the time.
(We later found out that meant they would cut her arm from wrist to shoulder to release the fluid)

I rocked her in the chair praying to God that she would be ok. We were so uncertain as to what her outcome would be. I was sad and Ron grew increasingly angry. How could this have happened? We had been up with her all night and never saw the nurse check under her cast to feel for any pressure or bloating. The leaking we think went on for about 12 hours or more.

She woke up about 4 hours later and was in somewhat of a better mood. I'm sure partially from the relief and also having at least one of the wires out of her. She was still hooked up for blood pressure, heart monitor, and oxygen.

We called our families and let them know what was going on. Ron's sister is a nurse and she was extremely upset at the negligence of something that is so easy to catch. Everyone was in disbelief as to how this could have happened. Her respiratory issues fell behind her hand.

Ron and I would both let tears out at different points when we got a good glance at her arm. I tried not to look at it but it was hard because we had to hold it up. Slowly, the top of her arm started to look better. It got progressively smaller and they told us the hand would take the longest to heal.

They told us the blistering would start soon and that it would be like 2nd degree burns. We were feeling better about it just being a cosmetic issue and less of an impairment of her ability to move or feel. We would go for walks around the floor to keep her occupied and I couldn't help but feel so lucky as we saw some of the other children there. Some had been there for months and had no discharge date in sight. A few were in somewhat of a vegetable state and would most likely be returning if they got to go home.

Ron's family came in from LA on Friday and that was a good distraction. We continued to talk with the plastic surgeon and the orthopedic Dr. The blistering to them was looking good and even though it was really hard to look at, it was all relative from where we had been.

We were lucky to have really good nurses after our experience and in their own way each expressed how sorry they were that this happened. They appeared mad and angry that one of their own could have let this slip by.

We were discharged Saturday with a 3 extra day stay because of the infiltration. We got the instructions on how to dress it and it became very interesting to attempt when Ron was back on the road. Changing it and looking how it had changed, I still hoped she would get back that precious skin I had grown to love.

A few weeks later the scab fell off on the gauze and underneath revealed a jagged looking separation and some discoloration. It has become my beautiful reminder of how much she has healed and how lucky we are.

I got another reminder in the mail last week.....a hospital bill for a four day stay.

I wish I could say that was the last hospital we've seen....but we just got out of Children's ICU this week. I'll get that blog started tonight...

Long Overdue

I really have about 4 different posts to blog about but will maybe just start with one, and please excuse all grammatical errors. I'm not gonna go back and fix them.

To dive in.......

Late November Jesse started coughing at my mother in law's house in LA. Her pedi wanted to see her so I drove 4 hours with a 9 month old that was coughing to the point of gagging...for 4 hours.

They said she had strep and bronchitis and gave us a breathing machine that would help open her airways and suppress some of the cough. She was doing ok for the week and Ron left to go to Canada over the Thanksgiving holiday to hunt with his brother in law.

The next week Ron came home and went back on the road. Her cough came back a few days later, a little harder with more mucus. Tuesday it got to be where she was coughing every 10 seconds. After a few calls to her dr. and then to the night nurse after hours, she told me I should go to the ER. I didn't want to go all the way to a children's hospital for fear that she would start gagging and have a hard time breathing for the 20 minute drive. We went to a smaller local hospital. They took us back and did a breathing treatment of albuterol and gave us an oral steroid. It seemed to quiet her cough and gave her relief. The gen dr. gave us a prescription for cough meds, steroid, and albuterol. She seemed to really be doing better until we walked outside into the cold air. The coughing started right back up.

There were no pharmacies open so I felt at a loss to try to help her. That night was really bad and I didn't know whether or not to go back to the hospital. I knew though that I needed to get her meds filled and maybe that would help her. I didn't want to get her in the car and have to wait for her meds to get filled at the pharmacy. She was asleep so I walked to the neighbors to see if she could go to the pharmacy for me. She answered the door and I couldn't get the words out. I started crying from being stressed and scared. She hugged me and told me she would bring me the meds.

Jesse woke up and I could tell she was really struggling to get in air. I knew I needed to go to the children's hospital. I knew the drive would be difficult because the more Jesse coughed the more she cried which meant the more difficult it made it for her to breathe. I got a bottle ready and threw everything into her diaper bag. I gave her a bottle as we drove off hoping it would pacify her a bit as we made the drive.

She did fairly well but as we got closer I could tell she was really having a hard time getting air in her lungs. Her breathing was very labored and short and I was scared. I left my car at the entrance and ran in with her to registration.

There was a nurse at the front that I'm guessing was there to evaluate the patients as they came in, that asked me what was going on. I immediately teared up and couldn't say anything but he could see and hear how bad she was. They immediately took me back to get her oxygen measured. They got the wire on her toe and the nurse was listening to her lungs. Several people came in and the nurse kept saying that she didn't sound as bad as what the numbers were saying.

I heard someone say to take us back to the OR, and my mind was going all over the place. It was a large room and it quickly filled up with about 12 people. Some were on laptops, some were getting medicine, some were telling others what to do, and the rest were working on Jesse. They quickly got an IV started, put her on oxygen, drew blood, got a urine sample, and got her ready for a breathing treatment. She was very upset by all this, and I tried to comfort her as much as I could. She became less stressed but still so tired from struggling so much.

She was not in a good mood and when doing the albuterol breathing treatments it makes her very restless, even though she wanted to sleep.

My sister and brother came up to keep us company and brought us food. They were deciding on if they should put is on the regular floor or take us to ICU. Ron was driving in from Shreveport and I was very anxious for him to get there.

They were very good at trying to make us comfortable, considering all that was going on. She was very restless and they even brought in a vacuum cleaner to see if she would sleep. (Don't ask, but it has helped her fall asleep since she was born.

Ron got there and I felt like a I could relax a little. It felt really good to have my partner there to help with her.

They decided to put us in a regular room and soon they were taking us up.

She did well tolerating the steroids but was still so restless through the evening. We attributed it to the albuterol and her not being a great sleeper. We held her all night as she would sleep for 15 seconds and cry for 15 seconds. Sometimes the machines would beep and wake her up, or nurses in and out. We would switch off standing up and swaying her, but she could never really sleep. Finally at about 7am I sat in the rocking chair, wrapped her arms and legs around me, and put my arms over them to keep her from fidgeting. I held her tight and she was out for about 5 minutes when shift change started and the new nurses came in.

They started to get her vitals and introduced themselves when I felt Jesse's shoulder.....

That's when I almost fainted...