If you would have asked us a year ago anything about a trachea, esophagus, ECMO, breathing tubes etc we would have not know very much. It is scary how much information we have absorbed in a short amount of time. Madi has been doing fantastic! She has kept us very busy in February so far. There were a couple days she had scheduled appointments, normally several each day, and she pulled her J tube out of her intestine and had to go to the emergency room to have it put back in one day. You know your daughter has spent way to much time in the hospital when the ER nurse says, “Is this Madi that spent a lot of time in the PICU, I have heard a lot about her.” Madi is still weaning down on her medications. When she came home she was on around 21mg of each of her narcotic medications. Since she has been home we have weaned to down around 6mg on one and 13mg on the other. This is a huge step… we are hoping to continue weaning successfully and her be off these medications around May! She should be a completely different baby by then. She is getting more and more alert as the medications are being decreased which is wonderful. She had an EEG last week to see if she is still having any seizures, it was a short 30 minute test but it came back normal which is fantastic news. As long as we don’t start seeing any seizure activity we should be able to wean that medication eventually as well. She is doing well with her physical therapy and is getting some head control back. She will tolerate laying on her stomach for a short time, as long as she can suck on her hands. She will roll from her back to her front (but refuses to do it when her physical therapist is here so we look like big ole liars haha) she recently had two bottom teeth pop through as well!

So, the educational part of today’s blog… Some things you may not know about Madi’s feeding tubes or trach! We are totally open to questions as well if anyone ever has any for us just let us know. We had no idea about these things until Madi got them. They seemed so scary to us until we were faced with using them in everyday life!

Let’s start with feeding tubes. It really is amazing… It’s like an earring hole in your stomach :). Madi has two, one that goes in to her stomach and one that goes in to her small intestine. The one in her stomach is normally to drain, which means anything in her stomach (stomach acid, swallowed saliva) comes out the tube along with air. This prevents her from refluxing these things up. Our goal is to be able to stop draining her stomach and her be able to tolerate things in there! The J tube, the one in her small intestine, is where she gets all her feedings and medications. because her small intestine is not something that expands like your stomach, her feedings have to be slowly given to her all day. So this means she is hooked up to the feeding pump 24/7. The tubes are held inside her intestine and stomach by a balloon. Kind of like a big ole earring back. Madi is not able to have anything in her mouth right now. Since she still has the type two cleft there is a big chance she would swallow it and it would run in to her lungs. Our prayer is that her stomach will be able to start tolerating things in it and her not reflux because of it. If this happens she can have her feedings more like a baby that eats a bottle. She would get “bolus” feeds which means over 5-10 minutes she may get 4 ounces at a time and then be able to wait a few hours and get that again. It would also mean she might could get something called a Blenderized diet… I research too much of course but it is where she would be able to eat “real food” and you blend it up and give it through the tube. I have read amazing things about how much healthier and happier the child is on these sorts of diets! So hopefully that explains Madi’s feeding situation a little bit more in depth!

Now on to her airway, which is a little more important than her stomach 🙂

I’m not really sure where to begin… So for now, there is a hole in Madi’s neck about the size of a pencil eraser. Sounds beautiful right?! For us it is! It is the only way Madi is able to breath safely right now. It hopefully will not be a life long accessory, but it will be a part of our life for several years at the least. A few things you may not know about trachs… We can’t hear Madi cry, coo, babble, nothing. It sucks. I don’t think I can really sugar coat that. We never really got to hear her too much because she was intubated for so long, but the few times she was extubated it was wonderful to hear her little voice. For you to talk or make noise, air has to come up through your vocal cords. Madi has vocal cords and they work 🙂 Praise the Lord, but there is a tube blocking air from coming up through them and a ventilator that is pushing and pulling air in and out of her lungs. There is one way we are able to hear her a little bit and that is if she pushed air around the trach and up through her vocal cords, this rarely happens as her airway isn’t much bigger than the trach right now. There is also a valve, called a PMV (Paci Muir valve), it is a one way valve. So air goes in to her lungs but when she goes to exhale the air can’t come out the trach so she has to push it up through her vocal cords. She gets to have short trials with it throughout the day if she will tolerate it and we are trying to work her up to more time with this on. She won’t be able to wear it while she is sleeping, but can wear it any other time if she is able to handle it. This is a prayer that she will soon be able to wear it more! There is something so helpless about looking and your baby while she is crying and hearing nothing. A lot of babies that have trachs will eventually learn sign language if they aren’t able to tolerate or can’t use the PMV for some reason! Our prayer is that Madi will be able to force air around her trach and make noises or talk or be able to wear this valve!

Something else you may not know is that we have to suction Madi’s trach quite frequently. For us we cough, or sneeze, maybe blow our nose to get all that stuff out of our body but for Madi when she coughes or needs to get that stuff out it comes out the trach. She does really well getting it up for us to suction, but needs help getting it sucked out since she is on the ventilator. It is kind of like having a straw to breath through and then having “snot” going up and down in it. Sometimes her oxygen will drop a little until you help her clear it out. It is definitely a different experience to put a tube down in your child’s airway and suck stuff out, plus her suction machine sounds like a huge air compressor when you turn it on so there is no discreet suctioning!

Once a week we take Madi’s trach out. Of course we put one right back in, but it gets changed weekly. Its a pretty nerve wracking moment. I thought I was going to have an anxiety attack the first time I did it. It is a different feeling and just strange to see a good size hole in your child’s neck and have to get this tube back in. It is not something you can just shove in, it does go in a certain way and can do damage if you don’t know what you are doing. Maybe one day we will video it so everyone can see. Madi is very well behaved while we do it, which we are very thankful for. We just recently had to start swaddling her arms down because she like to keep them in the way. There is a velcro tie around Madi’s neck at all times unless we are changing it or her trach. It is called a trach tie, this holds the trach in place so it doesn’t fall out. Anytime we go out we always have anything we could possibly need in an emergency, it’s a big bag ha-ha.

These are just a few things about Madi. It really only scratches the surface unfortunately. We are still learning and have only been doing this for a few months! The most frequently asked questions are “when can she eat by mouth”, “is she snoring” “Can you hear her cry yet” things like that. I thought this might help explain some of those questions. Again, don’t be afraid to ask us though, we are still learning but will try our best to answer anything you want to know. The last thing we want Madi to be is scary to people, this will be all she knows and normal and we want her to enjoy life to its fullest!