Can’t sleep. Oh I am tired! A chair in the ICU is just not conducive to sleep.

Amanda has been sleeping pretty well most of the night. Heart rate is down to a very nice range. I know we shall soon be bombarded with people seeking blood and wanting pictures (x-rays). It shall be a morning of tests and, hopefully, answers.

I did some sleuthing last night. The power of the internet is amazing! I sent messages to several spina bifida web site groups that I follow. My message was basically an “SOS” that explained Amanda’s situation and asked for help. I had people responding within minutes. Details will come later but I believe I am on to something! We will be getting a neurology consult in the morning and I can’t wait to see what we find.

Thanks for reading, following, praying.

Oh Lord I can’t wait to get a cup of coffee. Large.

just Laurel

I used to watch the show “House”. Have you ever seen it? Loved the show. There was always a patient with symptoms that were difficult to diagnose – and until they could diagnose, the patient kept getting worse until the mystery test was done that finally revealed the diagnosis – that led to the prognosis.

I feel like I am stuck in an episode of “House”.

Amanda’s condition has swung like a pendulum today. From appearing to be chipper and back to her old self, to suddenly dropping like a wet noodle into glazed eye sleepiness. We’ve given antibiotics for the pneumonia and her chest x-ray looks improved but yet she is retaining CO2 and they are talking of re-intubating her. Her whole body has been bloated like a fat sausage and we thought that breathing would be easier if we could get that fluid gone. Well – they gave drugs for the fluid and she’s probably peed 2 liters. Things haven’t improved. Her heart rate has been as low as 78 today and recently was racing up around 140. Her heart echo showed no problems with her heart. This morning after waking they got her up in her wheelchair and she happily devoured breakfast. Then the nurse gave her her meds and within eight minutes she slumped. Her face got red and she went from bright to blurry like a switch was turned. The meds were looked at – but were mostly iron and multivitamin, Pepcid and protonix – stuff that never causes reactions. She slept for hours, then rallied and actually sucked down a container of KFC’s mac n cheese and was cheerfully talking to visiting friends. She got her evening meds … then crashed again.
We have a slew of tests, x-rays, and a CAT scan scheduled for tomorrow. Hopefully, we can use the tests to rule things out and find some answers.

Pray.

just Laurel

Feels like we are hovering on the fence – waiting to see which way Amanda is going to fall. One minute she’s rallying and you see the old Amanda, and the next she is in bed, limp and sleeping. Just when the blood work comes back better, it falls the next time to unfavorable levels.

Pneumonia is bad enough but with Amanda’s squished and squashed torso, the lungs don’t have the best chance for great expansion – she’s not breathing deeply because she can’t. Her body is also bloated with so much extra fluid – that just adds to the constriction. If the CO2 keeps building up again, there are whispers of being put back on the ventilator with talk in the background of her going home with extra breathing tubes/help/machine/equipment … I don’t want to say the word of what they are talking about. She’d hate it.

Amanda surprised the doctors last time she had pneumonia. She just may pull through again this time. It’s been a long week and Ted and I are weakening. Pray for strength for all of us.

just Laurel

It stinks that we’ve been here a week already.

Sleep last night was blissful. Like a dried up old sponge dipped into a puddle of water, my body sucked in the quenching relief of rest to a weary Laurel. I could have slept much more but set the alarm for 7am because I didn’t want to sleep too long before relieving Ted. Plus, I wanted to finish up some laundry. (Ted and I now have an ample supply of clean underwear – in case you were wondering. I know I know – TMI)

Amanda is doing well as far as the pneumonia issue goes. Her lungs look good and blood work is all shuffling its’ way back to fairly normal values. Ted was with her this morning and said she got up and seemed to be fairly close to normal and even ate a healthy size breakfast. When I showed up, she was already back to bed. She barely opened her eyes to wave a hello to me, opting to focus on her desire to sleep instead. It was as if she got up feeling great, then crashed.

So, we are looking at all kind of issues now – doesn’t help that Amanda is so complicated. There’s shunt and neurological issues, bowel and bladder stuff, and just all the surgeries she’s had over the years – many that I have to explain to the doctors and nurses because they have never heard of them.

So the dragon roars and takes us on the proverbial roller coaster ride of unknown twists and turns. It makes me nauseous. (If you don’t know what I’m talking about – read the book.)

just Laurel

Wow.

The word fatigue doesn’t even describe it. Except for the two hours I ran home last evening, I was at the hospital almost 35 hours straight. Those of you who have done it will understand – you just do what you have to do. Ted’s job takes priority so I spend the days there so he can work. Tonight is his turn at the hospital. 🙂 Can’t wait for my body to be in my bed.

Amanda continues to improve. Heart doctor gave her the A-OK as well as the Endocrine doc. Just have to get a plan from the Pulmonary Doctor – my guess is that her sick lungs might need to come home with some oxygen for a while until we can wean her off of it.

Have to finish a load of laundry (Ted and I were running low on clean clothes – especially socks and undies!) and then it’s bed for me.

just Laurel

Day 6 part 2. Haha If you haven’t figured it out yet, I’ve got my laptop computer with me!

Amanda has eaten breakfast, put away a cup of ice cream, and just (tried) to eat some hospital-born macaroni and cheese. Even the extra salt I put on it didn’t help make it more palatable. Breathing is improving greatly. Heart rate is rather high and they are scratching their heads over that one, but it’s nothing too serious. Finally got some blood – the nurse who was able to grab a vein with her needle filled every possible tube she could fill so we’d have enough for any tests they could ask for.

I had to chuckle (again) at Amanda for 2 things. First thing is she has always had a history of not being able to cough without gagging and puking. Whenever she would get sick and have a cold, attempts to cough all that ‘stuff’ loose resulted in grabbing the barf bowl. Well, she is coughing gunk loose every 10 minutes and even hawked a lugi in a specimen cup for the nurse. No gagging yet. Gross I know. But grossly funny. I told her she may have just gotten good at it now and can skip the puking part.

The other funny, but more amazingly quirky thing about Amanda is despite her cognitive deficits, that girl can spell. She was phone texting a friend and telling them she had pneumonia. “And how did you spell pneumonia?” I asked. “P N E U M O N I A,” she answered. I bet a lot of adults couldn’t spell it correctly. Funny.

Another thank you to a couple of Morgan girls who sent up a darling bouquet of flowers – pretty yellow chrysanthemums with a yellow rose in a yellow happy face mug AND a little teddy bear. It was full of sunshine and cheer.

just Laurel

Day 6.

Really?? It’s been six days already.

Oh what a night. Night + hospital room does not equal sleep. Amanda was up and in her wheelchair for quite a while. It probably felt so good to be out of bed. Finally got her into bed around 11pm. However, she had to sleep with a bi-pap machine (it’s what a lot of people use when they sleep at night because they have sleep apnea) and Amanda uses one at home so she was used to it. However, there were issues with the machine as well as an unfamiliar/uncomfortable mask that meant restless sleep compounded with the machine alarming and people constantly poking their heads in the door to see what was going on. Finally switched machines at 230am and things quieted down.

Until 3am.

That’s when they started coming around to get blood work. The first person tried unsuccessfully. Half an hour later the second person failed to get blood from Amanda. Third and fourth persons have failed. Oh, if we could only figure a way to put a faucet valve on one of her blood vessels. So, we still haven’t gotten blood for the days ordered blood tests.

I must have dosed off around 6am and jumped when I felt someone touch my shoulder. It was 630am and Ted had just showed up. He made a stop at the hospital before heading for Indiana for the day. He brought me some food and I got to go down the hall and grab a cup of coffee. He is off to Indiana and Amanda and I thought we’d hang out at the hospital today.

Currently she is sitting up, coughing like a good patient, and eating breakfast.

So far so good.

just Laurel

It was ‘get off the ventilator’ trial day number two for Amanda. She failed yesterday. So, after a fairly good nights sleep (considering you are in a hospital and they wake you for everything all night long) they turned off her vent machine at 7am and the trial began.

Now to help you understand what this all involves – a vent machine forces air and oxygen through a tube that goes in your mouth and down your windpipe and into your lungs. It pushes air in and breathes for you. A person can’t talk, swallow, or breathe through their nose while this is happening. In addition, there is usually a second tube in your mouth that goes down to your stomach so they can feed you something while the other machine breathes for you and you can’t swallow or do much of anything. When they turned off Amanda’s machine, she had to breathe on her own while these two tube were in her mouth and constantly toying with her gag reflex at the back of her throat. She had to mouth breath through the tubes and do all the air exchange in her lungs. For 2 hours.

Poor thing. She lay so very still in that bed and just tried to stay calm and breathed in, then out, breathed in, then out while suppressing the dire urge to cough and choke. At times, she did start gagging and she would lurch in a silent coughing fit while her face turned all red and tears trickled down her face. Then she would settle down and work on breathing … again. We turned the tv on as a distraction and that helped. And finally 2 hours went by.

At the end of the 2 hours, they turned the machine back on and had to have blood taken immediately because they could measure the amount of oxygen and carbon dioxide in her blood to determine if she was effectively breathing on her own without a machine to help. Well, they couldn’t get any blood out of her. She is so bloated right now and most of her veins have already been used and withered. A half hour went by and I said to the nurse – “They didn’t get blood and she’s back on the vent so even if someone could get blood now, it would not reflect how she did when SHE was breathing and not the machine.” “You’re right,” she said. After a call to the doctor at 11am, they had to turn off the vent AGAIN for Amanda to try AGAIN – this time for just half an hour and THEN they would do the blood draw. The vent got turned off for a second time and Amanda breathed … and breathed … and breathed … and then they said “Get some blood!” For the next 3 hours she was poked by about 5 different people and in more places than I could keep track of. The whole time Amanda lay there and calmly breathed and breathed and breathed (she had to breath without the machine for the accurate blood test results – all with 2 tubes down her throat). Somewhere in the middle of that time one person DID get a splash of blood in the syringe and sent it for testing but it ended up not being enough. Finally blood was collected and by 2:30 in the afternoon, we got the word that Amanda passed and the tubes could come out.

I was amazed at how beaten up my poor little Amanda was and yet so strong to stay patient while she breathed while trying not to gag and choke – and was poked over and over again for blood through the whole thing. My turn for tears.

So – she is breathing on her own with a little oxygen for support. She was sitting up in her wheelchair when I left this evening. She is a bloated little sausage with greasy sticky hair, needle pokes everywhere, a hospital gown too big, tape residue on her skin, bruises from heparin shots, and just the bravest girl I’ve ever known. She was happily catching up on messages on her phone and looking forward to some ice chips – she will get started with a clear diet for now. Her throat is sore and her speech is whispery and raspy right now. She will need lots of rest to keep breathing strong.

Thanks for your continued prayers and thoughts. Oh – and a big long-distance hug to a friend from this area who moved out west – I will only say that he plays the piano very well so if you know him – you know who I am talking about – he had this huge basket of food delivered to the hospital today (cookies, pastries, cheese, crackers, nuts, fruit). Wow. Very thoughtful. Thank you, sir. Love ya.

My time at home is now done.  I need to freshen up and return to the hospital.  It is my turn tonight.  I will also be there all day tomorrow so Ted can work.

just Laurel

Finally home after a long day at the hospital.

Well, because Amanda was up most of last night, she failed her morning attempt to get off of the ventilator.  They turned the settings down so that she could breathe on her own and she was just too whipped to keep up.  She will get another try tomorrow morning.  But the doc wanted her moving more and suggested she get up in a chair today – and Amanda vigorously shook her head “no no no” with the suggestion.  This here mom said ‘yes yes yes’ and with the help of three nurses, we got Amanda and her iv pump, feeding pump, ventilator tubes and all the other good stuff from bed to wheelchair.  Oh she looked like the cat had dragged her in.  The poor kid is bloated and has the worst case of bed head.  But she sat up in her chair for about two hours and was fairly chipper.  It used to be that when a patient was on a vent – they were stuck in bed.  The nurses were telling me that they are even walking vent patients in the halls now!

Now here’s more modern medicine for you.  It used to be that respiratory therapists did ‘percussion therapy’ on a patient that involved patting them on the chest and back in a specific way to loosen all those sticky chest secretions.  Well, now they have the ‘vest.’  After we got Amanda and all of her stuff back in bed, they wrapped the ‘vest’ around Amanda’s chest and secured it with velcro.  Then it got attached to the machine that ran the thing.  That vest inflated and started shaking Amanda around like an off-balance spinning load of laundry!  Alright, she didn’t spin, but you should have seen that girl shake!

So her x-ray today showed improvement and with all the moving around she did and her wild shake-rattle-and roll ride in the vest, let’s pray for an extubation tomorrow morning!  Oh – we need her to sleep well tonight, too, so hopefully all that activity tuckered her out – plus a dose of Benadryl for good sleepy measure.

btw – I have a sick daughter in St. Kitts, too – so a dose of prayers needed there too.

Thanks for all the care, concern, prayers, phone calls, texts, visits, and love coming from everybody.  Sorry if I don’t always respond in a timely manner, or even respond at all.  The fatigue is quite consuming.  You kind of keep going, pointing yourself in the direction you need to go, and just get things done.  You don’t stop to contemplate any of it because you might start crying and Lord knows that takes too much energy.

I am back on duty early tomorrow so Ted can work.  It’s amazing what a night’s sleep in a bed plus a morning hot shower and cup of coffee can do to reenergize a person!

Love and good health y’all.

just Laurel

I am home for a quick shower before heading back to the hospital.  It was my turn on duty last night.  For those of you who don’t know, when you are intubated and a machine is breathing for you, you can’t swallow.  Saliva builds up in your mouth and the only way out is to have it suctioned out or it drips out your mouth and down your face.  I think I was sucking or wiping drool every 15 minutes last night.  Sleep?  What’s that?   sigh

So besides the saliva mopping, there was a constant, steady stream of people in the room all night.  A hospital is not a place you go to for rest.  Vitals every hour, glucose checks, respiratory treatments, another chest x-ray.  And then there are all the blood draws.  I don’t know what they are going to do.  For those of you who know, she has a p.i.c.c. line in her right arm – but they could not thread it in the whole way and it is only half threaded.  Can’t pull blood from it.  So Amanda has this wonderful vein in her left hand that now looks like one of those fine mist garden hoses with needle holes all up and down it.  I don’t know what they are going to do when that vein finally cries ‘uncle’.

Amanda continues to try to communicate with hand signals and when we don’t get what she’s waving about, she gets all red in the face and very frustrated.  (Imagine not letting Amanda talk!  It’s been 2 days now.)  So we hold a clipboard for her and she writes what she is thinking (when she is strong enough).  She was waving wildly after the nurse did some care with her and when she was done writing on the clipboard, she had written “Thank you”.  In the middle of the night last night she waved for the clipboard and wrote “Why did this happen?”

Must get back to the hospital so Ted can get some work done – he is off to Mansfield, Ohio.  He slept at home last night, but not very well he says.  Pray for safe and awake driving for him please.  And pray we can lose some tubes today for Amanda.

just Laurel