We brought him HOME!
First, thank you to those who have written and called to ask how we are doing and whether or not Kenny is healthy. The answers to those two are “We are doing FINE now … and Kenny is getting better.” I also want to thank you for all the prayers. I believe beyond a shadow of a doubt it was more the bending of the knee than the technology that brought about healing for my boy. However, I am thankful for both – very, very thankful.
So you know that Kenny was experiencing a good deal of pain on the evening of the 25th on into the 26th when I posted the last entry. We finally figured out that he was likely constipated, but couldn’t figure out why because the boy never gets constipated. We just realized it had been 48 to 72 hours since he pooped and well, he HAD eaten. So, we knew he was clogged up. But the weirdest thing happened at the same time – his respirations escalated and he was breathing in these short/grunting breaths.
The waves of pain became a constant pain (we couldn’t relieve it – not even for a second) and that is when we didn’t care whether or not we could get COBRA or had insurance or whatever else – we called my Aunt Paige to come stay with the girls and headed out the door at about 2:00 a.m. for the ER.
At the ER an Xray revealed that Kenny’s bowels were impacted up to his lungs. There were several tests ran, but the nurses and docs in the ER tried to make him comfortable with pain meds, and took a ton of tests. The ER doc thought perhaps his shortness of breath was due to the lungs not expanding because of the poop. Because of the undigested foods his blood sugar was 160 and they thought perhaps it was onset diabetes. They also said they’d have to admit him overnight and give him an enema to clear out his system. His white blood cell count was at 8, which wasn’t alarming, but his fever was constant and very alarming. His moans and groans were so very difficult to handle. Overall, he was very sick – toxic even – and we just wanted his relief to be immediate. As soon as the blood tests revealed he was not diabetic, we were sent up to a room and Kenny was given a glycerin suppository and a liquid laxative. He pooped within 15 minutes and cleared out everything in his bowels and anywhere else he could have been harboring poop.
Still, his fever was barely controlled by a Tylenol/Motrin rotation and his white blood cell count jumped to 30, then 31. He went from constipation to full-out diahrrea and vomiting. He began coughing, could not get deep breaths and ended up being put on oxygen. More tests, another xray and an ultrasound revealed pneumococcal pneumonia.
We were then transferred via ambulance to Texas Children’s Hospital in Houston, Texas.
In the ER at TCH Kenny was sedated (though not enough by any measurable mother standard) for an emergency tube thoracostomy which is an incision made through his side, the muscles, the ribs, and the chest wall to immediately drain the infected fluid that had collected between his left lung and his chest wall. We were not just dealing with fluid on the lungs, but fluid outside of the lungs – fluid that could collapse the lung. I stood in there with Kenny – face to face … trying to be brave and strong for him, but his screaming made me lightheaded and soon I had to sit down shamefully with my face in my grandmother’s chest to keep from passing out myself while my aunt Paige took over with Kenny. It wasn’t anything I saw – I did not watch the procedure. It was hearing him hurting. I could not handle hearing him hurt. The procedure, I’m told, lasted 10 minutes. It felt like an eternity. Kenny endured more than many adults could handle. The immediate relief came when the fluid just pulsed out of him through the inserted chest tub – squirting actually- and then draining. The inserted chest tube was left in place to gently extract fluids from his chest for the next 3 days. Kenny was then admitted to the PICU (Pediatric Intensive Care Unit). I remember feeling relieved that it was over. Our hope was that was all that was required.
I can’t even begin to tell you how scary it is for a 3 year old to go through all of this b/c as a 33 year old parent I was terrified. Jeff and I stayed with him the whole while. On the one evening when we thought we’d get a shower and a nap when he fell asleep, I think he overheard us because, even in his total exhaustion, he managed to stay awake until 10:45 (2 hours and 45 minutes past his normal sleeping hour). It dawned on us not too much later that he knew we were trying to leave – he likely heard us. It was then that we promised him we would not leave – that one of us would always be there – when he fell asleep, while he slept, when he woke. He was asleep in less than 3 minutes. He both understood – and still, somehow, after all we’d allowed (had to allow) to happen to him, he trusted us.
In the next few days he had blood drawn so many times – enough to finally render his veins unusable. On top of that, the IV had been re-stuck twice because the intensity of the antibiotics caused his veins to collapse. He was put under a lightweight anesthesia and then had a PICC line put in where they could both draw blood and administer his meds. Before he woke up they removed his first chest tube as it had not drained anything in 24 hours.
It wasn’t but 24 hours later that we were admitted to a floor room. FINALLY – a room where we had a bathroom to shower and relieve ourselves without leaving Kenny. There was a pull-out twin daybed that Jeff and I slept on every night – Kenny right beside us.
Though we had hoped the tube thoracostomy would be enough, Kenny did not get better. He seemed to be getting weaker, thinner, and his fever still would not go away. Another x-ray revealed a mass between the chest wall and the lungs on the lower left side. The following ultrasound revealed that this mass was loculated fluid under a thick fibrous pleural peel. At times, we are told that antibiotics can run their course and a child can pull through, but the day of Kenny’s surgery I had called the doctors to please come and evaluate him. There was a fear I had swallowed all day that I was going to lose my son. Jeff had left that morning to go home long enough to pay bills, get more clothes, see the girls, and buy some things we needed. I held Kenny all day with this fear in my gut – I could feel his strength draining from him. He had not eaten in two days; he was giving up. The surgeon came and discussed with me a procedure where they would use a small camera to assist with the thoracic surgery to identify and drain the loculated fluid without the trauma of a complete open thoracotomy.
Kenny went into surgery late at night. We were, of course, fearful. He was not breathing well and the last thing wanted when one has to go into surgery, or under general anesthesia with, is pneumonia. He came out with yet another chest tube, but almost immediately his fever was gone. Within 24 hours he had an appetite, attitude and color to the pasty face we’d seen for so many days. The surgery had provided a deep relief for him. His oxygen saturation (pulsox) slowly came up as his breaths became deeper and deeper. He continued on the antibiotic treatments through his PICC line, the daily xrays, and lived for two days with his chest tube, but I have to say the recovery was obvious.
Below is a picture of the fibrous pleural peel that was being pulled away from the chest wall and the fluid that had massed beneath it and had to be drained off. It truly is disgusting – looks like cheese pizza and green bile.
This is actually a picture taken inside of my son. This was why he could not get better until this surgery. Can you imagine?
We are home now – with 2 weeks of antibiotics to be taken every 8 hours. It is the nastiest, dirty-sock smellin’ antibiotic fathomable. Overall, I am relieved, but he is weak and still leaning to his right again (learned compensation to not ‘feel’ the chest tube on the left). His balance is a bit off and I think it will take a good 2 weeks for him to start looking more like the thick boy that he was before this all began. He cannot take a bath yet because we have to wait for the chest wound to fully heal. He wants desperately to swim around in my bath. I can’t wait to put him in it.
So, hug your children tight. Say a prayer for health and thank God for every day. I know I am. I walked into my home with tears in my eyes and a child on my body. I was never so happy to cross that threshold.
Also, a special shout-out for my Aunt Betty. My mother is miles away in Chicago and though she’d come at a drop of a hat, we had to have someone to take Jeff’s place at home with the girls within an hour when we left for the hospital in Houston. My Aunt Betty only lives an hour away, and so, stepped in and stayed with the girls the entire time we were in the hospital with Kenny. She is a precious gift from the Lord and we love her so very much for her willingness to come and the way she loved on the girls; they are still mourning her leave.
This has been hard on so many, but our immediate and extended family, church family and friends have pulled us through with all their prayers, care packages, financial contributions, visits, and listening ears. Even my two closest cyber friends (for lack of a better word) took care to call, take care of business, and make sure all the online business concerns were met so we didn’t have to give it a second thought. Our parents both live so very far away and have spent many suffering hours waiting by the phone or being forced through their day praying toward the next bit of news – it was almost easier to be on our end, in my opinion. We thank everyone – we can’t thank you enough. Bless you. GOD BLESS YOU.