Thursday, October 11, 2007

Bad day

An appointment I had first thing was postponed til later in the day, so I started to get things ready in the apartment for Reu coming home on Monday. I'd made some calls in the morning and when I finished washing bedding, there at the base of the machine was my mobile phone, washed and blow dried. All my numbers. Jason was charging a new one up for me and I picked it up from his office, very concerned it'd be late by the time I got to Reu and knowing he wouldn't be getting much attention.

When you move from the PICU (intensive care) onto the ward, nursing care drops in half. This happened on Tuesday night after two new trauma admissions arrived and Reu went to the top of the list of wellness, the ominous sound of the Baby on Board helicopter's propellor roaring above our heads. This means that Reu is often left by himself in a room with another patient and where I doubt his alarms can easily be heard down the corridor. It worries us sick. I remember Susan our primary in the PICU mentioning that you literally had to be there all the time, but after 3 months of PICU life, well, you have to live, you have to do things, you can't be there all the time. The other dad was sleeping on the sofa in that shared room anyway.

I was feeling frustrated with myself for the mobile phone incident wondering how I'd get all those numbers back again relating to Reu's development, schooling, Drs, and thinking how I desperately needed to get in and be with Reu and whilst doing so, reversed out of the parking spot outside Jason's office, pranging into his colleague's car. My first ever prang and something I feel absolutely terrible about although Carla is assuring me that it's all ok, no damage.

When I walked into Reu's room, the alarm was sounding that he was desaturating and I was met with the horror of dirty clothes through which I could see his chest retracting badly, struggling for breathe and looking grey, sweating and barely meeting my gaze. I immediately grabbed the suction cathetar and thought to hell with sterilisation and gloves (as Jiffy says, you can clear a virus with antibiotics later, but you can't...), poured a vial of saline water into his trach and began suctioning profusely. I got through another and yet another suction cathetar. There were so many mucus plugs that the process itself of suctioning them out of his trach only resulted in him having a completely blocked airway. I specifically asked that he be deep suctioned at night and first thing in the morning after I'd arrived yesterday to find him in good need of a suction.

I called the panic button and the nurse arrived soon after unaware that he'd been desatting and saying he sounded fine earlier. Dr De Oliveira, cardiologist, walked in soon afterwards and put her arms round me and the nurse took over. I just burst out crying and got Reu some oxygen. Dr De immediately ordered that Reu be moved to a room of 4 where there's always a nurse on attendance, reminding the nurse that he's chronic. That's sad to hear but it's true. If you fill his trach hole with thick mucus, what is there left to breathe through?

What if I hadn't arrived when I did? Reu has such a little leak left, that is, residual space left by the trach in his trachea through which sounds can be reverberated, that it's difficult to know, unless you're listening to an alarm, that he's in distress. At what point would a nurse have arrived? I felt more immediate distress than I have for a very long time and other than the 6 failed extubations, this was retraction and desaturation on the scale of when we rushed down the freeways to the ER on 12 July, the start of this long admission. It was at the time and I can say now in retrospect, horrific.

I gave my boy a proper bath for the first time in 3 months, taking all his wires and tubes off and restoring his beauty and dignity. It was the first time I've held him without him being attached to anything - whether wires, tubes, IVs, oxygen, nasal feeding tube etc, since birth. The trach tie velcro had scratched his neck and hadn't been replaced for 2 days, and the gauze was covered in secretions, another oversight.

His Gtube (feeding) Mickey button deflated 6 weeks ago and whilst I've been chasing up a replacement, he's since been on a Coreflo and during this episode the Coreflo spilt its contents of formula onto the floor. The nurse couldn't be certain of how much he'd lost, so basically, he lost the food for good. Surgery had been telling me that they couldn't replace the deflated Mickey with another until after discharge so I said, ok, discharge Reu, we'll sit in the garden and come in as an outpatient 5 minutes later. Our insurance company agreed. Trips back to the hospital are critical, but need to be kept to a minimum. Last time he came in as an outpatient, well, that was 3 months ago and 2 days later he was admitted.

I waited til Jason arrived at the hospital - we're going to make sure one of us is always there with him throughout the day til he comes home - and, after a pelt along the freeway, only relaxed when I sat in the Hampstead born dentist's chair which faced the Santa Monica Mts.


ellen charge said...

how scary yeah he needs to b in a room nearer to the nurses station i remember whe i was in the adults hosp i was in a room that was so far form the nurses if my drip sounded ud not here good thinng mum knows alot bout kangaroo pumps lol coz i wa on one in the kids hosp i was allwasy at least in the room closest to the desk where they could c and hear me at all times once they had me in another room then i got a huge feaver so they put me back up near them and there i stayed they allwasy tried to keep me close coz though i dont have wat reu has i am a charger wit quite sever probs and if i vomited to much or got a serious infection i could get really sick and they didnt want that

Eva Nichole said...

That is very scarey and its sad how different the care is from the ICUs to a normal room. After Eva's open heart she had to be sucked and her alarms were going off, I was in the room but a nurse never came in to check it. I took care of it and I have to say I love our Children's hospital but that the worst stay. I felt like since they didnt seem to care why couldn't I take my baby home I could do this all at home. But they still made us stay a few more days.
I am so glad you were there for Reuben and you did arrive when you did for a reason.
Crystal and Eva

mighty max and mommy said...

Oh my friend, oh my friend. I had difficulty breathing just reading your post. I am so terribly sorry for such a scary, frustrating morning.

I remember clearly when Max went to the floor...I cried a lot because I felt so alone and frustrated. Keep speaking your mind and being his best advocate. FIGHT FOR WHAT YOU NEED! Seriously...not in a mean way, but the squeaky wheel gets the grease and that is SOOOOOOOOOOO true in the hospitals.

Take care my friend...and I am excited that you finally got to hold him tube free. Isn't it so special? You will remember it always.

Love, Amy

yp said...

Miracles and blessings... it is a difficult spot to balance - somehow one has to find a way to be constantly vigilant without allowing the dire "what if"s to create darkness. I hold a sacred place for you in my heart where you are bathed in the light of optimism, enthusiasm and wholeness. I know you will endure, succeed and thrive - for we have, and you are already so far ahead of us if one were to lay us side by side in time.... so much love to you-, yuka

mog-aj said...

p.s. We put a small piece of gauze swab in behind the velcro tapes on Alfie so it doesn't scratch Unfortunately as the tapes stretch the velcro bit doesn't and leaves it exposed. The squeaky wheel comment is so true, that is why we found ourselves living in the hospital for 7 weeks. i hoe things improve but keep speaking out, it works and don't wotty about being a pain. The most important thing is Reuben and you 2. Sx

Mary said...

Oh, "bad day" does not begin to describe the day you had! I am sending hugs, prayers and love to both you and sweet Reuben.

My mother had Parkinson Disease and my husband and/or I stayed with her 24/7 for 12 weeks.

I know what an ordeal it is to get the hospital staff to suction. Often I could not get them to come until I asked that the doctor be called. Being close their station is good but you are still at their mercy.

What a blessing when you get to have Reuben home.

skeybunny said...


The floor is a scary place for our kiddos, and not every "floor" is equal. Do they have a special respiratory wing? There is one at our Children's Hospital, and I request a room for Evan on that floor if at all possible.


PS So far, I have washed a total of 4 cell phones. We were locked into our contract for over 2 years because we kept taking the deal to lower the replacement costs. They were always Jeremy's phones. He learned to check his pockets!

xXx ~ Jac ~ xXx said...

Hey Catherine, been a while...

To my understanding - well, what we do as policy at work anyway.... Any child with a trachy always has a nurse to look after them and them alone on a 1-2-1 basis, and I'm surprised it's not the same in the US?! Glad you realise he ought not be on his own though, and Reuben is all the more blessed to have you as his parents. Hugs and kisses!

Lisa said...

I am so sorry you had to experience that...we had very very similar situations with Kennedy in her early months in the hospital. I guess it's a problem everywhere. Graeme and I have often said it's a miracle she survived the hospital stay. I got to the point that I would not leave her to use the washroom unless someone was there. It's horrific the gross negilgence that occurs.