Tuesday, May 7, 2013

What's what.

Through the years I've found some of the most helpful suggestions come from families like ours, who are living or have lived similar lives and share what worked best or even worked the least for them and/or their child. I'd like to say thank you to those of you who have offered suggestions or advice for us and Wyatt's care. I hope you know that we greatly appreciate every comment or email with offers of prayer, words of encouragement and the great amount of support that's been been extended to us along the way. We love hearing from all of you who read here! Please continue to comment or email us if you have something to say. These days we rely heavily on prayer (and a lot of caffeine!) to get us through.

I've received several emails or messages offering suggestions of draining Wyatt's G-tube continuously or to try Farrell bags and such to help with his belly pain. So, I felt it was probably appropriate to dedicate a post to explaining what Wyatt has attached to him at all times and why. Including some of the equipment that we use and to share what we found works well for us. I realize I don't always mention certain aspects of Wyatt's care because it's so routine and "normal" for us, it gets forgotten. So, here it goes:

Wyatt uses a Trilogy ventilator for respiratory support. Due to respiratory weakness, respiratory failure and/or respiratory depression (you may pick a term to use), he relies on the Trilogy to do the work of breathing for him and receives 25 breaths per minute. Wyatt has used multiple types or settings of non-invasive ventilation since he was about 5 years old due to apnea and hypoventilation. Despite relying fully on ventilation he still has a very significant amount of atelectasis, or non inflated/collapsed lung tissue. But we do the best we can.

We use a few different types of masks that we switch between to avoid breakdown and relieve pressure in different areas on his face. Some masks are more comfortable and some are just more reliable. We use nasal pillows while he is awake and a nasal mask while sleeping. Right now we really like the Swift FX nasal pillows for when he's awake. With this type of mask he can wear his glasses, which is a big deal! I like using this type of mask on him because I can see more of his face, which always brightens my day. We use the Mirage micro for nighttime or while he's sleeping. It's a reliable, easy mask and of late we get less leak with it than we do with the nasal pillows. Though, today I just ordered a new one- the ComfortGel blue. With the huge amount of swelling around Wyatt's face we've been struggling to get a good fit with the Mirage micro without leaving huge marks and indentations. We've had to tighten the mask against the edema so much his face is becoming flattened and it's pushing his jaw back, which concerns me. So, I'm on a mission to find a better fitting and reliable sleep/nighttime mask. We've used the Mirage micro for years now, so it's about time to switch it up. We also have a full face mask, the Mirage quattro, that he uses in times of great distress.

We bleed supplemental O2 into the Trilogy at all times. At this time he requires anywhere between 3-6 liters of oxygen continuously along with the support of the Trilogy. When at home we use a high flow concentrator that can deliver up to 10L of O2. And Wyatt has tested the limits of this on occasion- indeed, it does work! When we leave the house we use liquid oxygen in portable Marathons. Liquid oxygen lasts longer on a higher continuous liter flow than the E tanks that we were using- we love that! We have a large canister in our home that holds the liquid oxygen that we use to fill the marathons or we can use it as a backup oxygen supply should we need it. It's not pretty, but a necessity. We do keep a small back up supply of E size oxygen tanks in our home, as well, just in case we need them.

The pulse-ox sensor is the little red light that's attached to one of his toes. The pulse-oximeter on the other end of that sensor tells us his pulse (heart rate) and the amount of oxygen in his blood. He's attached to this at all times to monitor both of these things. His heart rate and oxygenation can tell us a lot.

Suction machine and oral care-
Wyatt requires suction when he's unable to clear his airway of secretions, mucus or, at times, blood. The frequency he requires suction varies greatly depending on his level of alertness and health. We can also brush his teeth by using suction toothbrushes on the end of the tubing. So nice! We have a portable suction machine for in our home and when we leave the house. I also use a lot of toothettes to swab his mouth, as well as lemon glycerine swabs and aquaphor for his lips.

We utilize nebulizer treatments to open up his lungs/airway as much as possible. We use them as we need to. Today he's wheezy, so he's already received albuterol and saline nebs. We have a tee adapter on his vent tubing that we connect the nebulizer cup to and the vapor/medicine is then pushed into him with every breath the Trilogy gives. And if Mommy is standing nearby and gets a breath of Albuterol she will be buzzing around the house for the next few hours- that stuff is potent!

The vest system-
The vest system we don't always use routinely, but have relied on it heavily when in times of great decline to his respiratory system. We call it his "shaky vest," as it shakes his body so rapidly, giving pulses to his torso, to help break up mucus and clear his lungs and airway.

GI system and IV-
Wyatt's G-tube and J-tube are both set to drain continuously- we use leg bags for this. We drain secretions, bile and decompress his intestinal tract to relieve pain and pressure by draining these tubes continuously.

Due to the severity of intestinal failure Wyatt is unable to receive any nutrition or hydration via his GI tract. He receives all of his nutrition, hydration and medicines through a double lumen broviac, or known as a central line. This is an IV that is threaded through a large vein in his chest. We've had the most success using steri strips to secure and IV3000 as a dressing over his central lines- this combo has been the most gentle to his skin.

A double lumen central line means it is split into two separate IV access points that come out of his chest. For Wyatt, we then need to divide each lumen into more IV access with trifurcated (tri-fuse) extensions on the end of each of those lumens to accommodate all of his nutritional and medicinal needs. He has three IV pumps, two Curlins and a CADD pump, that are running continuous infusions, 24hrs a day everyday- TPN, Fentanyl and saline. We also have a med line that is accessed continuously and we use a syringe pump to infuse his medications each day. One day a week we add a fifth IV pump to infuse Omegaven, a fatty acid supplement that is used in place of the lipids (fat) in his diet. Due to the severity of his liver disease he was granted approval for compassionate use of Omegaven which is still in the trial phases for FDA approval. The Omegaven is also a continuous infusion. Up until recently he received it more frequently than once a week, but at this time his liver is unable to process any more than a very small continuous infusion one day a week.

We wrap all 5 IV lines in a 42" line tamer to keep them together and more secure. These have been very helpful for us- I highly recommend them if you have multiple IV lines hanging around! We use a regular backpack that we adapted to hold his TPN, saline and both IV pumps. Wyatt's particular backpack is from Hanna Andersson- it's held up remarkably well for holding a lot of weight everyday for the last couple years and enduring its fair share of abuse from us! When we infuse Omegaven, the IV pump for it also goes in the backpack, while the glass bottle that it comes packaged in hangs in a hanger we constructed ourselves on the top of the IV pole or on a carabiner clip inside the backpack when we are on the go. His Fentanyl bag and its pump gets gently shoved into the same backpack when we leave the house, but at home it is in its own bag so that it's easily accessible for us and the hospice nurses. At home we hang both the backpack and Fentanyl bag on the top of the IV pole, along with the Omegaven. The syringe pump is attached on the pole by a clamp, as well.

Wyatt has a supra pubic catheter that drains his bladder continuously. This is an opening, a stoma, below his belly button that a Foley catheter passes through and into his bladder. We secure the foley to his abdomen with duoderm and tegaderm to prevent pulling and irritating the stoma. Wyatt is very sensitive to any movement of the catheter, so securing it well is necessary! The foley catheter is attached to a foley bag that collects the urine. We change the foley catheter at home every few weeks and prior to completing a course of antibiotics for infection.

Well, I think that covers everything that's attached to him or that we use frequently. I hope this helps to explain a part of what we use, what you may see in our pictures or anything you may have been curious about. Believe it or not, there is actually more that I'd like to share someday- maybe I'll do a 'part 2' of this post- but for now I must stop. Wishing you all a good day!
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  1. Hi! I just found you through a #mitochondrialdisease search on Instagram. My niece is Kendall, daughter of @terratalking, and she's in the hospital so I've been updating my followers on how she's doing. Wyatt is amazing! Glad to find you. XOXO

    1. Hi Lindsy! I'm happy you found us too. Thank you- yes, Wyatt is one tough kid! I'm actually friends with Terra through Facebook and Instagram. I've been thinking of them a lot and reading her updates. <3