Thursday, June 27, 2013

Turn left

I have a sick sense of humor, as I'm sure I've mentioned in other posts.

A very sick sense of humor.  As in, when someone trips and falls, my initial reaction isn't the normal, "Are you alright?" It's more uncontrollable laughter. The type of laughter that is so completely inappropriate that when I try to control it, it gets even worse. And while I'm not exactly proud of this character flaw of mine, it has saved my sanity on many occasions. 

Like when Tess was so sick a couple of weeks ago and back in the hospital for the second time in a three week period. 

The hubs and I have a pretty good system worked out when Tess is in the hospital. Usually, I spend the days and nights with her while he tries to stay home with the older girls and go to work. He comes to the hospital the first day of her stay and then, if we can manage it, not again until she is ready to be discharged. However, when she had her bilateral hip surgery, it was such a major deal that we booked a hotel room right down the street from Children's Hospital and switched off at night, every other night, and we both stayed with her during the day.

Then, after we had come home and she got sick with a post op pneumonia and ended up needing to be transferred from our small, local hospital to a better equipped one, I was too scared and she was too sick for me to feel safe enough to let him leave us, so we were both spending the days in the hospital with Tess and at night, he would drive to his parent's house about a half hour away to sleep while I stayed with Tess. 

Along with our super duper hospital stay system, we also have worked out a meal system because other than our local hospital, they do not provide parent trays unless you want to be charged a fairly hefty fee for it. And take my word for it, the food is just not good enough to warrant that. Anyway, our deal is, if the hubs has spent the night away and is coming in in the morning, he brings breakfast with him. Then I would go get lunch, then he would get dinner and so on and so forth. 

No problem when we are at Children's Hospital because we have been there enough that, even though it is a huge hospital,  I finally have got my bearings about me for the most part so I can get to the cafe,  or Au Bon Pain or CVS, or you know, the gift shop, not to mention the laundry room, the Prouty Garden, etc. It's all very familiar to me now, enough so that even when I get "lost", I can quickly right myself. 

But Maine Medical Center? Forget about it. It's like Dr. Suess was the architect and Mr. Magoo was his assistant. The place makes no sense and seems to have no rhyme or reason to it's design. 

Have I mentioned that along with my sense of inappropriate humor flaw that I am also directionally challenged? 

VERY directionally challenged. Ridiculously challenged. Like Zoolander challenged (remember from the movie? He can't turn left). Yeah, it's that bad.

So after we had been at Maine Medical for a couple of days with the hubs going to the cafe to get every meal because I would whine like a toddler that I just didn't know how to get to the cafe and he did so it only made sense for him to get the food, he decided enough was enough and it was time for me to put on my  big girl panties and go. get. the. damn. food. already.

Sigh. I did my best martyr routine but to no avail. If I wanted food, I had best go looking for it. He did however, very helpfully, give me exact directions.

"Turn right out of this room, go down the hall, out thru the double doors, down a little ramp and right again. The elevators are there. Then hit the B for basement and head left, then left again and then left again and you're at the cafe."

 Simple. Easy peasy lemon squeezy. Even for the directionally challenged. I was confident. Ready. Good to go as it were.

I headed out of the room and made it to the elevators without any mishaps, pressed B and exited out into what appeared to me to look like the way we had come in a couple of days before. Near the ER. Hmmm....And when I went down the hall, after turning left, the only left appeared to lead out to the parking garage where I was positive we had parked our van. To my right were signs reading ER and Day Surgery.  Nary a Cafe sign in sight.

Curiouser and curiouser.

I felt my heart start to speed up in that fun, panicky little way it does when I know I have zero idea of where I am. But I was a girl on a mission. I would not turn back at the first signs of trouble. I forged ahead towards Day surgery and found a maintenance worker. I very politely asked which way to the cafe? She looked at me like I had just dropped in from Mars and shook her head as if to say, "Lady, you are nowhere near the Cafe." Then she started pointing back down the hall the way I had come and proceeded to tell me, in a foreign language, how to get to my destination. The only word I understood was "elevator".

Well, crap on a popsicle stick. Elevator? Really? Then what? I pretended to understand what she was telling me and reversed direction. Screw it. I went to the elevator and prayed that I would find someone who spoke my language. The language of the overwrought and directionally challenged. I was in luck. A very nice man told me that I should have gotten off on the ground floor not the basement.

  GROUND floor, Charlie. THE GROUND FLOOR and not the basement. I was ready to kill the hubs. But I made it, finally, to the cafe and set about foraging for something to eat all the while muttering under my breath about what a rotten, dirty trick that was to play on me and oh yes, he would pay for that one. Pay dearly, thankyouverymuch. I could just picture him sitting up in that room chuckling at the mental image of me aimlessly wandering through the bowels of the hospital. Because I am not the only one who can have a sick sense of humor. Yeah.

After paying for my meal and then literally getting lost leaving the Cafe, I headed back to the bank of elevators but what was this? They weren't the ones I stepped out of. I figured they had to go to the same place so I hopped in and pressed 6, very relieved that my ordeal was almost over. When I got out and headed down what I thought was the right hallway, I saw that I had somehow made my way to the Psych Ward. Was God trying to tell me something, I thought in my haze of panic? And by this point I probably looked quite deranged what with my humongous tray of food overflowing, the limp I had now developed from new sandals that had chafed a lovely blister on my heel, and what I am sure was a crazy look in my sunken in, exhausted looking eyes. Plus, let's face it, I was still sort of muttering to myself about the very real possibility of hurting the hubs. Yup, in hindsight it's a wonder I got out of there at all.

After a very kind nurse took pity on me and practically walked me all the way back, I finally made it to our room, handed the hubs the tray of food with a murderous glare and shrieked at him, "BASEMENT?! BASEMENT?!" His response? "Did I tell you to go to the basement? Whoops. Sorry. The Cafe is on the ground floor. So what'd ya get me good to eat?"

The man is lucky to still be breathing.

The next afternoon the hubs seemed to think it would be a great time to try to take Tess off of the oxygen because she had been having a good day, and after discussing it with her doc, with me telling both of them I thought it was a bad idea and that she wasn't ready, they removed the oxygen from her to see how she managed on her own. I want you to remember that I TOLD the doc and the hubs that I did not think this was a good idea and I got overridden.

We moved Tess from her bed and into her wheelchair for a change of position and put her movie on then went and sat on the bed/couch and started messing with Charlie's cell phone. It used to be Blake's but she had upgraded to an Iphone so the hubs got hers by default so it still had her outgoing voicemail message on it. We figured it was high time to change it. After messing around trying to figure it out and a few different attempts at leaving just the right message on there, we heard the monitor alarms start to scream. Both of us jumped up (you know, after remembering that oh yeah, there was a very sick kid in the room who, just maybe, we should be paying attention to) and realized her oxygen had dropped down to 86 while we were playing with a cell phone. Poor Toodle Bug was laboring to breathe as we fussed with just the right wording of an outgoing message on a cell phone. Because we know what's important. That is called good parenting, my friends. Or neglect. Whatev.

Charlie grabbed one side of Tess as I grabbed the other and within seconds we had the oxygen on her and turned up all the while bickering about whose fault it was. The nurse came running in and found us like that. Holding on to Tess and bickering. And both turned to her and started telling her our versions of what had just happened. In my version, I never wanted her off the oxygen to start with so clearly this wasn't my fault. In the hub's version, he didn't give a crap about the outgoing message on the phone but I distracted him with it so clearly it wasn't his fault. The nurse was cracking up at us and needless to say, no lasting harm came to The Toots from that little slip up.

After the nurse left, I must admit, Charlie and I laughed pretty hard as well. It was just so surreal. And stupid. And scary. And so not the life we had envisioned. But there we were. And ultimately, if you can't laugh at the scary stuff, it will swallow you up.

So yeah, I have a pretty sick sense of humor. And thank God I do. Now, if I could just figure out how to turn left....

Monday, June 10, 2013

Just keep breathing

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. ;)