It has been some time since I have been able to get here to the blog. I know that isn’t completely new but this time I have a real, and horrible, reason. You see everything in my life changed on January 1st. Jemma was coughing a little bit on the 31st of December and I slept in a chair with her that night. On the 1st, she was still coughing. When I pulled her into my lap for a nap, I heard her breathing and she was struggling while at rest. I brought her to the ER. She was diagnosed with Croup and, after 3 unsuccessful breathing treatments and a dose of steroids, we were transported via ambulance to Children’s Hospital. On the way there, we found out she tested positive for RSV. I thought that was the worst day of my life.
We were waiting in the ER…
We were directly admitted to the Pediatric Intensive Care Unit (PICU). She slept on me all night and did well. Her pediatrician called and they told her she was doing okay and would be transferred to the floor. That is exactly what happened. We went to the pulmonary floor on the 2nd of January. She was doing okay and her pediatrician was even told that she may be going home the next few days. We were given a large bed so I could sleep with and hold Jemma.
I have never left her side. We slept together even.
Things got worse though. Jemma was diagnosed with Pneumonia. They stopped her steroid and she rebounded within 6 hours. She was placed on antibiotics (Ampicillin) for that. She restarted her Dexamethasone (steroid) and titrated it down over several days.She kept spiking temperatures so they did a blood culture. The culture came back positive for Staph Aureus. A little less than a day later, we found out that staph was MRSA. Antibiotics were changed to Vancomycin. Jemma had a reaction called Redman’s Syndrome (not sure if I spelled that right) so she was placed on Benadryl prior to each infusion. They ranged from every 4 to 6 hours depending on her blood levels (called a trough). Jemma continued to get worse. Her blood cultures always came back at 17-19 hours. It just seemed that no matter what they were doing, it wasn’t helping. Respiratory came and did percussions, they added other medications to her regimen (first Linezolid for a day, Gentamycin for a few, then Rifampin when it was all said and done). Jemma was just not getting better.
She had ups and downs. She loved hanging with mommy though.
She really had days where it looked like she was getting better and then our world would fall out around us again.
A good day where she was “reading” her menu.
She had a chest xray which showed more pneumonia on the 8th of January. I kept telling them that she was in pain. She appeared to me to be having some stomach problems. After a day of these complaints (so on Wednesday the 9th), the ID (Infectious Disease) team decided to do a chest xray (to check for irritation) and a belly ultrasound. They came back later telling me that she had a pneumothorax. They added oxygen (which at this time had been on then off) to see if they could reinflate the lung. Six hours after the first xray, she had another. I was waiting and scared because we knew if it weren’t better, she would need a chest tube. A doc from radiology came into the room and stated bluntly that she was going to get a chest tube at 5:30pm. Nothing else was said to brace us for that news… I wailed. This was what I thought was the worst day of my life. I handed my baby over to strangers and she got her chest tube. She did great and was back up to our room quickly because they said “she doesn’t like us”. She just wanted to get back to her mommy.
The day before our lives changed forever. All she wanted was her baba.
The Rifampin was added about this time due to the lack of changes with her blood cultures. It made her miserable with skin issues so they stretched it over 3 hours but she was just not happy. I had to hold her for 3 hours while she whined and cried. She was uncomfortable from the chest tube and I finally was able to get them to give her Oxycodone for the pain. It was raised and then switched to morphine to help control the pain and reaction effects. On Friday of last week, the 11th, we brought Jemma down to the APC for a CT scan. They wanted to make sure she didn’t have a pocket of staph somewhere that was feeding this infection. An anesthesiologist came into the room and blurted out that she would be intubated. I was terrified and I lost it. I was yelling at them and crying. That was not part of the plan!!! I knew that it was a bad thing for Jemma and that she would end up on a ventilator, at least for a while. I was so upset but they finally just said they were doing it. I laid my baby down on the bed and walked away. I was nearly hysterical.
A short time later, we received a page telling us that we needed to go back to APC. I saw one of her ID doctors standing there and she told me “Jemma is okay but I need to tell you what happened”. My heart sunk. She put her hand on my back and led me to another room. I remember telling her that she was scaring me and all she would say is that Jemma is okay. We walked into a room that was for procedures and there was a bunch of chairs in a semi-circle. I nearly passed out… told her to just tell me what happened because I was scared… I was so scared. I knew it was a bad, bad thing to have this set up. Two ID doctors and the attending from the floor were there with Mike and I. They told us that when they intubated Jemma, her blood pressure dropped. They had to give her 3 doses of epi before her blood pressure would stabilize. She had a line inserted into her thigh and was on a continuous epi drip to keep her blood pressure up. Basically, my baby coded but they didn’t have to do chest compressions. They decided not to do the test because she wasn’t stable enough. She was brought up to ICU. We were brought to a conference room and told to wait.
This was, without a doubt, the worst day of my life. The absolute worst.
After an hour, someone came to talk to us. Jemma was in critical condition. She had a double pneumothorax and had to have 2 more chest tubes placed (one on each side). She was still having problems with her blood pressure. Her oxygen sats were not good. He told us to wait. So we waited, and waited some more. A social worker came in as did the chaplain. I just wanted to see my baby. Finally, the doctor came back and told us that she is on a ventilator. They couldn’t put her on a traditional ventilator because it was too much pressure. She was on an oscillator ventilator (and still is). It doesn’t look like she is breathing. There is no up and down of her chest. We were led back to her room. Nothing could have prepared me for what I saw.
My worst nightmare…
I have worked in an ICU and I was still shocked. Someone grabbed me because I started to fall down. I thought I was going to black out. I just have no words really. We found out that she was Vancomycin Resisitant as well that day. Her WBC count was 89000. This was a huge development because that means everything they had been giving her up to this point was not working. They started Jemma on Daptomycin late Friday/Saturday morning and she was back on Linezolid.
I am always at the hospital. I never leave. I visit Jemma several times a day (about twice an hour) but don’t stay long. It is just too hard to be in there with her like this. My baby is there but you wouldn’t know by just looking at her. The nurses tell me her blood pressure and pulse go up when she hears me. My God, I love her so much it hurts.
I visit her often. I pray, cry, sing and talk to her.
Since that day, last Friday, things have been changing. Her blood cultures have all been negative since the 11th. Her WBC went from 89k to 47k to 41k, to 35k for 2 days. This morning I went in and she is at 28.8. She is on her way down!!!! They discontinued blood cultures due to the 3 days of negatives. So we wait. She is currently on the oscillator ventilator. They are very slowly trying to wean her down. Very slowly because she still has an air leak on the right side (hole in lung that needs to seal). She is paralyzed from medication, completely sedated.
Friday morning Jemma was talking to me and now she is not moving, not breathing on her own, and completely sedated.
I have a few other things to share about what has happened. If you follow me on Facebook, you may know already. But, I need to stop this post here as I have tears streaming down my face. I will share more as the days go on and try to keep everyone updated. I have things to share about the BEST day of my life, our insurance woes, my job woes, Mike’s job woes, and more.
I am very humbled by the love and generosity of people. A wonderful group of like-minded friends (we are friends from an online book club) have set up a benefit for Jemma. You can see Jemma’s benefit here. They have gathered a lot of great book and reader prizes for auction. It is just amazing. I have been in the hospital with Jemma for 15 days, no longer receiving a paycheck, and we are spending a small fortune on food and gas. Thankfully my parents have my older kids and I am finally able to start seeing them again without breaking down. I miss them terribly!
During one of their earlier visits… Johnny and Joley
In the meantime, please pray for my baby girl. She needs the prayers. She has a long road ahead of her and it is a very slow process. I don’t care about the slow… I just want her to get better.
Here is the progression for those that didn’t follow my long-winded post… croup/rsv –> pneumonia –> staph infection –> MRSA –> Pneumothorax –> Intubation –> Double pneumothorax/blood pressure problems, ventilation –> VRSA (very rare, by the way)…. and now we wait.
Please share this post with the buttons above if you don’t mind. The more people that know what is going on with Jemma, the more prayers, good thoughts, or healthy vibes that will be sent her way. Thank you!
See the whole progression for Jemma here.