Okay. Where to begin? Oh, I know.
"Let's start at the very beginning. A very good place to start." (a little Sound of Music nod here)
If I recall correctly, when I last left you, Tess was on the road to recovery from her bilateral hip and tendon lengthening surgery. We were able to bring her home after about eight days in the hospital. She seemed to be doing quite well. She was requiring some supplemental oxygen at night but we thought it was due to pain medications that, when mixed with her seizure meds, suppressed her breathing a little. We were told it was all a normal post-op reaction. And it was. Until it wasn't.
After we were home for three days, Tess developed a cough. My radar went off slightly but I was so very tired I just couldn't fathom anything else to have to deal with. I mean, she had survived a major surgery without any big complications. We were over the hump. We had to be.
Suffice it to say, I couldn't have been more wrong. And thank God, Sheila was here when Tess got really sick. We came home on a Wednesday and by Sunday afternoon my livingroom was full of EMT responders and our Dr. Jen while our home suction machine was whirring and the oxygen concentrator was going trying to get Tess's 02 sats up to a decent level. It was chaos. Controlled chaos but chaos nonetheless.
The ambulance crew got Tess loaded up and took us by ferry to our local hospital on the mainland. At first the nurses and docs didn't think much was wrong with Tess. Her sats in the ER looked great. Her chest x-ray? Wonderful. Blood work showed a slight white blood count elevation which is an indication of an infection but given how great everything else looked, everyone was pretty calm about it all. Still, the pediatrician on call wanted her admitted into Special Care for observation. Thank the good Lord. We had no more got her settled into her bed than she had a coughing spell so bad that her oxygen level dropped to 61. Did you get that? SIXTY FREAKING ONE!!
They slapped the oxygen on her and suctioned her out while I stood back and had a small stroke after practically shrieking at them to "DO SOMETHING!" because you know, I am helpful like that. I just know that Sheila (who, God bless her was still there with us) and the nurse on duty were so thankful I was there to tell them to "do something". I am quite sure they wouldn't have been able to grasp that "something" (mind you, I had zero idea what) needed to be done without me. You're welcome, Sheila and nurse on duty. You're welcome.
By early (like 3:30 am) Monday morning Tess had spiked a fever. They repeated the blood work and her white blood cell count was quite high. She was immediately given a shot of antibiotics and her regular pediatrician was scheduled to come in and see her in the morning. When he got there, he ordered some IV antibiotics. Tess had gotten a little worse but we figured it was pneumonia and her doc really didn't want to repeat the chest x-ray because he figured why expose her to more radiation when it was quite obvious what was wrong.
By 9:00 Monday night Tess was requiring more oxygen just to be able to maintain an okay level of 02 in her blood and she was breathing super fast. Like 51-61 breaths per minute fast. Not good. We had an awesome nurse who came in to tell me that she did not like how Tess was doing and had called her pediatrician to let him know. He ended up ordering another chest x-ray and was on his way to the hospital. My spidey senses were tingling. Especially when we were moving her around to position her for the x-ray and she never woke up. Not once. Not even a flutter of her eyelids. I had stroke number two right around that time.
We were back in Tess's room when her pediatrician came in with two x-rays in hand. He showed me the difference between the two, the first one taken the day before when she was admitted, and the second one from that night. Even I could see from them that Tess was in a whole lot of trouble. On x-ray, her left lung was a "total white out". In other words, full of pneumonia. Her right lung was also affected but not nearly as bad. He then proceeded to tell me that as soon as he saw the x-ray he had made a call to Maine Medical Center in Portland and, after discussing it with their on call pediatrician, had made the decision that Tess was too critical to stay at PenBay and would be transported to Maine Medical Center ASAP. And to add insult to injury, she couldn't go in a regular ambulance because she was too sick and that Maine Med was sending their Intensive Care team/ambulance for her and I wouldn't be allowed to ride in it with them.
I just started crying. I looked at him and told him that I had never left Tess's side when she was sick. What if she died and I wasn't there to hold her hand and tell her that I loved her one more time? Poor doc Stephenson. He was patting my back and telling me that he thought Tess would make it but that she was very, very sick and might need to be intubated to have a machine breathe for her. I told him I needed Charlie and asked how much time did I have before the ambulance showed up. He informed me it would be about two-three hours before she was transported and that if I thought I could get Charlie here in time, then I should call him. I got on the phone to my dad. He has a lobster boat. He could get Charlie to the mainland. To me. To us.
By 11:30pm Charlie was at the hospital with me and at 1:20am we met the Intensive Care team that would take Tess to Portland. The doctor in charge came to talk to me and the inevitable question came up...Have you signed a DNR (do not resuscitate) on her? I looked that doctor dead in the eye and said, "You need to hear me. She is a FULL CODE. If the worst should happen, DO NOT stop working on her until you see me again." Then it was time to say goodbye to Tess and I leaned in and whispered to her that I loved her and was so proud of her and that I knew she was very tired but she needed to keep fighting. Don't stop fighting. Just keep breathing. Mama needs you.
Then I kissed her goodbye and they were gone. And it was like deja vu from the night she was born. Right down to the whispered words of, "Just keep breathing. Mama needs you."
Charlie and I loaded her things up, thanked Doc Stephenson and her nurse, and got in the van to head to MMC. It was about 1:40am. We arrived at MMC about five minutes after Tess had gotten settled into her room. Her transport went without a hitch and the team was very happy with how she was doing.
Tess needed another 2 x-rays and 2 ultra sounds of her lungs over the course of the next eight days. There were many worries and she was the sickest I have ever seen her. Regular discussions of the possibility for needing chest tubes and intubation were happening. When the doctor's making rounds kept asking me if she looked like she was back to baseline after the second day I had a small spell and proceeded to instruct them to not ask me that again. To stop comparing her to the stereo type they have in their minds of "kids like Tessie". I then told them to keep in mind when comparing her to "kids like Tess" that this, in fact, WAS Tess. Not a kid like her. There is no other kid like Tess. My Tess is smart, funny, engaged in her world, giggly, loving and on and on. She is NOT this listless, lifeless lump that is laying in the bed struggling to breathe. Next I showed them photos of Tess with her sisters and said, "Look at her! Look at her eyes, her expression, her level of engagement and then you tell me if you think Tess looks back to baseline.
They did not ask me again until about five days later. Yes, I was probably a little harsh with them but if I don't stand up for Tess and tell everyone who she is and what she can do, they just assume that she is happy to lay in bed and stare blankly into space. Such a stereotype and one that needs to stop.
Alas, it was a scary few days and ones that won't be leaving my memory anytime soon, if ever. I pray to God she won't slip back and end up sick again. She still technically has pneumonia but we are managing it at home now. She has not needed oxygen for the past two nights which is a good sign. Her nurse is here today and said her lungs sound better. Not super great but definitely better. Once again Mad Eye Moody comes to mind with his favorite saying, "CONSTANT VIGILANCE!!"
And we're on it. Poor Tess can't get a minute's peace. We run in with every cough or yawn. We take turns sleeping at night in her bedroom so that one of us is literally always right there to help her if she needs it.
And when I get sick of it, and feel so tired I just want to cry, I think to myself, "You suck it up, ya big baby and be grateful she is still here to do it for. Because there were a few dicey moments when it looked like a very different outcome was going to happen. Then I remember leaning over the ambulance stretcher and whispering into her little ear, "Just breathe. Mama needs you."
And I send a prayer of thanks up to God along with a plea to keep her well and please, oh please, give me strength and courage. They were both in short supply last week. At least, it felt that way.
Just keep breathing. Good advice for both Tess and me. ;)