Monday, arrived early at CHLA for the planned Ear, Nose & Throat (ENT) procedure to determine the cause of the upper airway obstruction following Friday’s failed extubation. It was Friday, wasn’t it? I lose track. ENT didn’t go ahead and Reuben was put back on his vital feeds, his weight still hovering around 4kg. I got pretty upset, called ENT myself to relieve my conscience perhaps that I was doing everything I possibly could to make it go ahead today. The ENT surgeon called the PICU and spoke to the Drs here to reiterate the lack of window of opportunity for the procedure until Thursday.On the vent, whether on CPAP, pressure support or a rate, Reuben's sats are 96-100%, his respiratory steady in the 30s/40s, his heart 90-110bpm. His cap blood gas, for the unitiated in PICU ways, the cause of the marks on his feet where they draw his blood, continues to come back "perfect", CO2 36%, ph 7.4.
Jason had an idea that perhaps they should try extubating again today and once again, Reuben was taken off his feeds at 4am in preparation. Reuben’s bed was surrounded by 16 of us, Attending, Fellow and Resident Drs, nurses and respiratory therapists (RT). How many more times we'll witness this? Extubation failed, ditto Friday’s horror story and yet this time the news could not have been worse for us. Using a scope which projected the results onto a screen, we all watched avidly as the camera worked its way through thick and bubbly secretions, to witness potential laryngeal malatia, floppy tissue on either side of his throat, vocal chord paralysis? Perhaps this is due to the missing facial nerve, perhaps it explains his inability to swallow and his Gtube dependency. It is most certainly attributable in part to his long 8 weeks of intubation on the vent. The source of his breath has been the eventual inhibitor to his ability to breathe by himself. That bitter irony smacks me hard in the face.
How can Reuben go from no oxygen support at birth, to home on oxygen, to prolonged intubation to this, with or without ventilator support? Jason rejoiced, wanted (did) to kiss the messenger back in May when ENT's original scope showed that this airway was "beautiful".
All we’re thinking now until ENT do their thing on Thursday is how our sweet boy will have to deal with yet another surgery and a new accessory to his so very battered body, one we have dreaded these four long months, yet perhaps all along delaying the inevitable, a tracheostomy.
Is there an alternative to a trach? Could it be that there's another granuloma blocking his airway? Can the vent have done this much additional damage since his last granuloma removal? http://reubenjackdodd.blogspot.com/2007/08/throat-surgery-went-well.html only a month ago.
We are both so desperately deflated and sad today.
"God grant me the serenity to accept the things I cannot change the courage to change the things I can and the wisdom to know the difference."
10 comments:
Catherine,
Such a change in circumstances since we spoke two days ago, but as you have said before, such is the complexity and changing nature of Charge. But, whilst I am aware that you have so not wanted to go down the Trach route, if it is necessary for him to enjoy the basic essential of not struggling to breath and so, start to thrive in himself, then it is with grace that you accept the inevitable, at least for the time being.
We will be thinking of you all on Thursday.
With love
Erica
Catherine,
My heart aches for you... I read your previous post and I must admit that I was so profoundly affected by the emotions and memories that it brought back, I couldn't put a sentence together. I couldn't sleep tonight so I came back online and read Yuka's post on the listserve and immediately came back to your blog.
As you know, Gracie is trached - - for the same reasons that it is being discussed for Reuben. She was trached Sept. 15, 2004 (one day shy of 17 months) following three weeks of intubation and four failed attempts at extubation. What you wrote in Saturday's post regarding the attempt to extubate so accurately described Gracie's experience and mine as I watched and held her. When they did her last bronch right before the trach, she was breathing through less than one of those little coffee stir-straws... and yet her sats were good - - it was her CO2 that became toxic. Such a fighter... just like Reuben.
I can completely understand wanting to avoid the trach. I pushed so hard to avoid it... but in the end, it was our only option. When they wheeled Gracie back to the PICU following her surgery, it was the first time in three weeks that I'd seen her face without tape... the first time that she looked truly comfortable and peaceful... it was then that I found my own sense of peace with what I had so adamantly fought against.
If this becomes the route for Reuben, while it will look very different from what you've envisioned, it will be okay. You will just have some extra accessories on the journey and you'll sometimes alter the path you take.
There is so much to say... so much to share. I will call you today.
Thinking of you,
Kristi
I just recently started reading your blog. I am the mom of a 2 year old boy with CHARGE named Ben. Ben has a trach and went through almost the same nightmares you are going through in the ICU before he got the trach. First, they tried to open his nose and thought that would help. His nose didn't stay open and it didn't help even if it was open. They couldn't figure out what was going on after many, many failed extubation attempts. It was finally found that Ben had laryngeal malasia - and a trach was our only option. We were told the malasia would improve with age (and it did, he malasia is completely gone). But, because Ben was intubated for 3 months, he now has severe damage to his airway from the breathing tube. In order for him to get off of his trach now, he needs to have his airway completely reconstructed. This can't be done until Ben stops aspirating his secretions (due to uncoordinated muscles in his mouth). If you need to talk or ask questions to someone about the trach, please feel welcome to ask me. My email is amy.russo@gmail.com. My son's blog is benrusso.com. I know every situation is different and you guys are really going through the ringer right now - but know that the trach has become a natural part of our life (if you have to get one). It is hard, but you adjust and it isn't as scary now as it was at first. Good luck to you guys.
Catherine,
Lucas now 18 weeks also has partial Facial Palsy on his right side with possible partial vocal cord paralysis and Laryngomalacia. He also had trouble breathing and we went back to the hospital after being out of NICU for over 2 weeks (w/o any oxygen etc.) because of breathing trouble and feeding trouble. Our ENT did a procedure to laser Laryngomalacia and he has been ok since, although he was very positional for several weeks. (meaning we had to watch and adjust his neck to help). I don't know if they have tried to laser on Reuben but I guess it's worth asking about... ... You can see pictures from Lucas procedure here: http://mkweindorf.blogspot.com/2007/08/17-days-of-itu.html
Oh Catherine-
You already know how unwelcome the trach was in our lives when Keith was gifted with it, and how it was our ticket to health and home....
This process of diagnosis and "problem solving" in the unit can be relentlessly exhaustive, wearying, wearing and depleting. May I suggest to take time and preence and priority of mind and heart to center yourself and your family on the most important things - this sacred moment and each other. Hold that space in complete wholeness and peace and use it as the internal reference to give you the source and restoartive care you so richly deserve. Holding you all with great love- yuka
Catherine,
Try to just concentrate on one day at a time. Keep strong for sweet Reuben. He is such a beautiful baby. Prayers to you and your family from Charleston, WV.
Oh my friend...how my heart aches for you. I will always remember the first night I was told Max would need a trach. There was a new doctor on call and it was about midnight...and here in a dark, quiet room, I am learning that my son will require yet another medical device to keep him alive. I was terrified. In the weeks and months to come, I always had that lingering fear (it was pretty much a given he would need it unless heart surgery went really, really well - which it did) and was so terrified and absolutely deflated...just as you wrote today.
The best piece of encouraging news I received was from another meeting with our medical team.
1) They said they never have had a family regret getting a trach. Always scary at first but they never regret it because of 2) allows the child to use his energy for development, playing, etc.
This will not be an easy journey in the weeks ahead...but please know we are holding your hands (albeit from far away) every day.
Much love, AMy and Mighty Max
So many terms and phrases, so many decisions, so many conditions and prognosis, so many perplexed situations. We feel for you, Jason and Reuben and empathise with your dilema. To do or not to do as it might be phrased. In your heart you'll find the answer, from the doctors you'll receive the recommendation, from your friends you'll receive their experiences and from everyone you'll receive the love and support. I'm in no position to advise but if all paths journey to the bridge, its the bridge you must pass.
I so feel your pain in wondering if, and even knowing at times, that our wonderful world of medicine, while it saves our childrens' lives, also can cause further problems for them. I've had many "what ifs" when it comes to our two boys with CHARGE. Our 11 year old ate completely on his own for the first two months of his life until his heart finally won the battle and began burning more calories than he could take in. An NG tube was put down and that was it for his swallowing. Later came a g-tube which he is still fed from today.
I would be asking the same questions as you if my child at one time was breathing all on his own with a "beautiful" airway. So hard to stomach. While we don't have experience with trachs, we are like Amy where the possibility was presented to us after a few failed extubations. But I have to agree with others that if that is what is decided, you will handle it and adapt beautifully just as the countless other CHARGE families have.
Are they letting you hold Reuben during his extubation attempts? I think I've written before, we've had several failed attempts between our two boys and I have wracked my brain trying to think of everything that worked for us(I mentioned Heliox previously). We've had extubations where doctors have been ready to come in and re-intubate and we've talked our way into giving more time, trying one more thing and in some cases it has worked.
Holding Tate up with his head on my shoulder giving him PT on his back seemed to help him really well. This took many of us to accomplish since suctioning and O2 were going on as well.
I am praying that what is meant to be for Rueben comes to pass. If that is a trach, I will pray for peace and understanding for you with that too.
He's just about the most handsome little guy one could ever lay eyes on!
We are keeping you all in our prayers!!!!
God Bless,
Corrie Young
Darling Catherine,
Keep smiling - there will be good news around the corner. We will keep praying for beautiful Reuben and the challenges he is yet to face, and for you and Jason to find the wisdom to choose the best path for Reuben.
Anne x
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