May 26, 2016

The Big Ventilator Switch

The time had come for us to switch Aiden to another ventilator once and for all. He weaned himself to such low pressures on the VDR, there wasn't much else they could do for him. But of course, there was still the big decision of which ventilator to switch him to.

There was such a debate again that the director of the entire NICU weighed in on the decision. And he decided to move to conventional ventilation. I was thrilled to hear him say it.

His reasoning reflected my feelings exactly. He argued that he's an older baby now, and because of that a conventional would feel better. Since it gives him normal breathing rhythms and even allows him to take his own breaths, it would help him thrive on a psychological level as well.

In order to test if he was truly ready for this, they bagged him as a way to copy the feel of a conventional and see how he did. And he did awesome. In fact, his CO2 levels began to drop as they did it. After seeing how well he did, the medical director made the final decision that he would indeed be moved onto a conventional ventilator. (YAY!)

Before making the big switch, they wanted to extubate and then reintubate him with a larger tube. Because the tube going down his throat doesn't completely cover the circumference of his esophagus, you get what's called an air leak. Air leaks happen when the air the ventilator is forcing into your lungs ends up escaping from the extra room around the tube. Ultimately an air leak isn't wanted when anyone is intubated. But because his lungs are smaller and he's been on higher pressures, they want a little bit of an air leak in order to control the pressure better. On the flip side, to much of an air leak means that he isn't being properly ventilated. It's a very fine line that I quite frankly don't understand. I do understand that his air leak had become too great, and therefore they decided he grew out of that tube size and needed a bigger one before we moved him to conventional.

Because of Aiden's C-spine precautions, they didn't want to reintubate him at his bedside. You have to stretch the baby's neck all the way back in order to get a straight shot down the throat. Extending his neck too far could paralyze him. So they ultimately decided it would be better to take him downstairs to ENT. This way they would be able to put him asleep under general anesthesia, and then use a tool called a Glidescope to switch him out. Ultimately they wouldn't need to move his neck at all while they switched out the breathing tubes.

He has already been extubated and reintubated three times before genetics came by and mentioned his C-spine might be a problem, so a part of me felt that going down to ENT was pretty silly. But I agree it's better to err on the side of caution and was relieved that he would be asleep for the entire process. I've been lucky enough to not see any of my babies being intubated. David on the other hand has seen both Lydia and Aiden be intubated multiple times, and he tells me he still has nightmares from seeing it. It's not a pretty sight. And if David is that terrorized, I can only imagine how frightening it is for a baby to experience. So I was perfectly fine with them putting Aiden under before anything happened.

When the time finally came to take him downstairs, I giggled to myself as I observed there was more machine then baby leaving. They had to bag him the entire way down and he did great. When we first started to leave he woke up and began to panic himself, but when I took his little hand he calmed right down from there. As they wheeled him away to the surgery room in ENT, and as David and I went to wait in the surgery waiting room, I felt a panic attack coming on. I knew he was going to get upset before he was put under (and believe me he surely did - they told us he put up a good fight and had a big desat before he went to sleep) and I wasn't there with him. He was only back there for 30 minutes, and that 30 minutes felt like an eternity.

The reintubation went perfectly. They also put on a micro-cuff around the bottom of his tube that will allow them to inflate or deflate the opening and control his air leak. And he now has a bigger tube and won't feel quite like he's breathing through a straw when he gets upset.

When they brought him back upstairs, his entire medical team and multiple neonatologists came to watch as we immediately hooked him up to the conventional ventilator. This was a big moment and time to see if he could handle breathing on his own with this ventilator. When he got all hooked up, his audience all exclaimed with excitement as he immediately started to breath! He was even breathing on much lower pressures then they were expecting him to! I let out a huge sigh of relief myself. I was holding my own breath as they hooked him up.

When he started to wake up from the anesthesia, he was a little grumpy. When I put my hand on his head and told him everything was ok, he peeked an eye open at me and reached out his hand. Everyone ooed and awed as I took it and he calmed right down.

He's been on the conventional ventilator for four days now, and he is doing really well. His PIP and Peep pressures have been significantly low for him, and he's been doing much of the breathing on his own. I learned that a conventional ventilator allows him to breath on his own accord, senses if he needs more support for his own breath, and then gives him breaths in between as needed. I've been staring at the ventilator screen religiously, mentally charting every breath he takes on his own, and it's amazing. The machine barely needs to step in and give him extra breaths.

Aiden seems to be a new baby as well. He's much more comfortable in general, and the moments he does get upset you can actually console him. He hasn't had a moment where he's spiraled out of control and has brady spells to the point of nurses standing by to perform CPR. And when he wakes up, he's much more happy and content.

I have a good feeling about this ventilator. I think he's really going to start taking off and begin to prove even more doctors wrong.

I, on the other hand, have been thinking about his future surgeries non-stop after his visit to ENT. He has at least three surgeries that will happen for sure, quite possibly many more. And those surgeries are going to be much longer than a measly 30 minute tube switch. I'm going to have a hard time not falling into a complete panic attack while he's in OR for hours.

Walking down to ENT 

May 21, 2016

Lessons Learned At The Ronald McDonald House

We made the decision this week to officially check out of the Ronald McDonald House. The biggest reason we were staying there was for convenience and distance. Living an hour away from the hospital (even more if you take into consideration dropping off the girls with a babysitter first) makes traveling each day a nuisance. The time, miles, and gas would really start to add up. But the girls were feeling very homesick so we ultimately decided their happiness outweighs the gas.

As we packed up and cleaned our room, I couldn't help but feel sad to leave.  It's been a very humbling experience to stay there.

Growing up I often did service projects through my church youth groups and clubs in school for the Ronald McDonald House, as well as other similar organizations. I remember observing the people I was serving and feeling pity for them. Not in a self-righteous way; a real, genuine feeling of sympathy. I always left feeling very blessed for my own life.

I never thought I would be on the receiving end of those service projects and hoped I wouldn't be. 

It was a very strange experience at first to be fed dinner from a group of volunteers and get the same look of pity and concern that I'm sure I gave so many people myself. And it was especially hard for my pride to embrace the fact that I was at mercy to these volunteers for the food I was eating.

I often found myself feeling guilty for staying there. I met so many people that were from Texas, Montana, Oklahoma, even Idaho. They all seemed to be battling even greater trials such as lukemia or spina bifida. I couldn't help but think, should we even be here? We are only an hour away, not several states away.

It wasn't until staying there for a few weeks that I started to feel differently. Everyone there is so friendly with each other. And there is a strong mutual feeling of love and respect towards everyone else.

I had a mom and her young son casually start chatting with me one day. Her son was very obviously in the middle of battling cancer. He was completely bald and barely had any eyebrows or eyelashes left. But he was as cheerful as can be. When the mom noticed my badge for PCH has NICU on it, she asked if that's the reason we were there. After explaining to her why Aiden was there, she said, "You poor thing, I can't imagine having a baby in the NICU! That must be so hard."

My children battling cancer is one of my biggest fears. And yet, here I was sitting next to a mom of a boy going through cancer, and she said couldn't imagine being in my shoes. I was baffled.

David and I had a similar experience with a Dad there. I can't remember the exact details, but he was there with his wheelchair-bound daughter that clearly had a severe mental handicap (and I don't mean that in a derogatory way), and a toddler son. They were from a few states away, and was currently separated from his wife and other son. His wife was in Texas getting a different procedure done for their son who also has a handicap. And yet, this Dad always had a smile on his face as he managed to push a wheelchair, stroller, and stack of medical equipment around the house alone.

He was friendly to everyone there, always chatting with other families. And each time he saw David and I, he made a point to ask us how our little guy was doing.

As I met countless other families I made more of a point to observe the people around me. I was in awe at the kindness and generosity everyone displayed. And they all had a general concern for the people around them. No matter what they were personally going through - and believe me, when you are staying at the Ronald McDonald House it's never something easy - they would make a point to show love and concern for the other people around them. Many times I observed families cry with other families, or cheer as a child they just met made a milestone on their medical paths.

I very quickly realized I was a lucky person to be surrounded by so many strong, kind,  genuine people. And it made me realize that I'm blessed to be in the group of people on the other side of the serving counter. I may have hoped I never would be before, but now I'm glad I am. What an honor it is to be served. And what's an even greater honor it was to meet those families.

May 14, 2016

A Fire In My Belly

Ever since our last care conference, I've been feeling very lost and unsure of a lot of things. I've continually been promised through blessings that Aiden will live a long and happy life. But it's so incredibly hard to hold on to that when each day you are faced with new obstacles and doctors telling you it isn't working. Since David and I had to discuss at what point we would let him go, I've felt myself losing my faith and hope for him.

I've been wandering around in a fog, even feeling detached from things around me. And feeling very distracted as these solemn emotions and worries weigh on my mind.

We've been invited into a group at PCH called Rainbow Kids. It's specifically for families with children that have critical complex medical conditions that are life threatening. I definitely have a love-hate relationship with it. It is amazing and offers an incredible amount of support. We've had the opportunity to meet some very special families. Everyone there gets it. It's a great club to be a part of, but not one you'd ever choose to be in either.

They meet every tuesday and provide you with lunch. It's a nice chance to get out of the hospital room and chat with other families. Like I said, everyone there has experienced the ups and downs of having critically ill children and gets it. We can all relate to each other and there is a mutual feeling of empathy and sympathy that is hard to find outside the hospital.

This past tuesday I had made plans to take the girls out for awhile while David stayed at the hospital. I decided to leave a little earlier and not go to the lunch this week. But as I started to walk out of the hospital, I couldn't shake the feeling that I needed to stay. So I went back, and joined David for the lunch.

During lunch they give you the opportunity to introduce yourself and the medical condition your child has. As we went around the room, I couldn't believe it when a mom said she has a son with a skeletal dysplasia! A different one than Aiden, but a type of dwarfism nonetheless! After the introductions, she announced that she needed to come talk to us and scrambled over to our side as everyone in the room snickered. I could tell she was just as relieved and excited as we were to have someone to relate to.

As we chatted for a bit, she asked if we have been able to find other families with this kind of dwarfism yet. When we told her no, she logged on to her phone and started to search with us through the Little People Of America site. She found a group of people listed there, then went to Facebook and looked them up with me. 

I'm so glad she was there and helped us find that. We haven't been able to find those resources ourselves just yet. Even with his skeletal dysplasia being so rare, there has been a lot of information to shuffle through and try to understand on the Little People website.

This Facebook group only has 600 people worldwide in it. And those 600 people in the group consist of moms and dads, some grandparents, and individuals with dysplasias within the SED family. And they are all amazing. Within minutes of being accepted into the group, we were welcomed and messaged by a swarm of people. They all offered us tips and advice, and most of all hope.

As I sat in the pumping room, I talked to and (I'll totally admit it...) Facebook stalked several families, and I bawled. So many babies have and still are following simular paths to what Aiden is experiencing. Not all of course, these dysplasias are relative to the individual person. But he's so similar to the majority of people I talked to.

And the best part is there is one other family in Utah with a child that has his same dysplasia.

I cannot tell you how relieved I am to finally find a support group. I know I was supposed to go to the Rainbow Kids lunch that day, the spirit was practically screaming at me to do so. It gave me a renewed sense of energy. We've got this!

I'm sure we've been driving his medical team a little crazy. After all the information we've received from these other families, we've been even more nosy and involved. We've had his dietician sit down and outline all the numbers to make sure he wasn't being over fed. We've handed his doctors and nurse practitioners names of other specialists within the Little People Of America as well as locally to contact. I even had our family pediatrician call his neonatologist to put his own two cents in on Aiden's course of care. I'm sure we are gaining quite the reputation around the NICU, but this kid is one of a kind. I have no doubt I'll end up teaching doctors about him his entire life.

Aiden is also making some great steps with his progress. We've finally got his sedation in a good place. He is comfortable and isn't having agitation while also having normal awake and sleep patterns. His pulmonary hypertension looks good enough that they are going to give him less medicine for it. And he's been steady enough with his CO2 levels that the doctors no longer feel the need to constantly be monitoring them.

And as for ventilators, his doctor decided he's in a good place right now. So we are going to keep him on the VDR Ventilator and give him a chance to continue growing before we push weaning again. 

The attending neonatologist that wanted to put him back on the jet ventilator is leaving for two weeks, and the next attending to come on is the one that was wanting to go to the conventional ventilator. So David and I hope that she can get him on to the conventional before they switch attending doctors again.

Big yawn

May 10, 2016

The Battle of the Ventilators and A Hiccup

I've been discovering just how complex of an organ the lungs are. They are made up of strands of cells that are connected throughout sections of the lung. If you damage one cell, it'll go through and damage all of the connecting cells. And once they are damaged, they're damaged. If you have large sections of damaged cells, it causes the lung to get tough and therefore has a harder time expanding. So the act of growing and developing healthy lungs is a fine art.

The VDR Ventilator they put Aiden on after his collapse allows for bigger pressures that keeps the lungs partially open at all times. It also vibrates the lungs constantly. They use this ventilator as a rescue tool for collapsed lungs, or for if a child aspirated oil, as an example. The pressures and vibrations are really good at opening the lung back up and shaking out anything inside them; which is why they moved Aiden to it. But the higher pressures and vibrations are also very damaging to the lungs, so the doctors haven't wanted to keep Aiden on this ventilator long term.

The past week he's been a Rockstar and continually weaning off the pressures. He got low enough that his medical team felt like he could be moved to another type of ventilator. And that's where our battle begins.

His neonatologist wants to move him back to the jet ventilator. This is the one he was on since birth and up until they switched him to the VDR. Her claim is that since the jet is more gentle on the lungs, it'll give him a chance to grow healthier lungs. He could potentially wean off the jet until there are no pressures. We could even give him a chance to not have to be trached and breath on his own.

But then his other neonatologist and respiratory therapist came back to say yes, but, he didn't do well on the jet. With the jet ventilator he had a hard time staying expanded, and we had to increase pressure pretty high before we moved him. A conventional ventilator would continue to keep him expanded while also allowing them to move towards putting a trach in if he needs one. And in their opinions, a conventional can grow healthy lungs too.

Some think the jet is a step backwards and would prolong his hospital stay. Others think the conventional will do better since it's more similar to the VDR and he's done so well on that. Which makes the jet voters say the VDR is more support. While the conventional voters say it can be more support, but the amount of pressure he's weaned to isn't really that much support. Some say the jet will grow healthier lungs, the others say it evens out in the end no matter what he's on. It's been a constant back and forth for a few days.

David and I think he should go to a conventional ventilator. He really did struggle on the jet ventilator. Plus, if he ends up needing to be trached, you can't have a trach on the jet ventilator. Why go to the jet when that can't work with a future possible medical need? That seems backwards and counterproductive.

And really the biggest difference between the two is that a jet ventilator offers him small breaths at a high frequency, while the conventional does something similar but also allows him normal breathing patterns and to take his own breaths on top of it.
His neonatologist finally decided to give him the weekend and would reassess everything on Monday. Which brings me to our big hiccup today.

Sunday night our nurse noticed he might be having some reflux. He was coughing on some milk after eating. She was right, because this morning he projectile threw up out of his mouth and nose.

They were worried he aspirated some of the spit up and promptly did an xray to see. He looked a little hazy, but not bad. So the doctor decided to just watch him.

Then they decided to put in an NJ feeding tube. Rather than one that goes down his throat and into his stomach, this goes down through his nose and into his intestine. This would eliminate any milk coming up and him aspirating it in case he spits up more. They will still keep his old feeding tube in his stomach and keep it hooked up to an open syringe so that he can burp and release air through it, but no food will go into it. His nurse said that since they continously feed him on this feeding tube straight into his intestines, it can also be really good for him in the sense that it will prevent some of his fluid build up.

He did not like putting in that NJ tube, but seemed to settle down and had a really nice afternoon. He had a good nap and was recovering - until he started to gag and have reflux again in the early evening. He got so bad at one point that yellow bile shot out through the open syringe leading to his stomach tube.

My poor baby was miserable. He would start to squirm as if he was uncomfortable, chew on his breathing tube, then desat as he gagged. Then yellow stomach acid would shoot into his vented tube and he would start to cry. You could look at him and just see that he wasn't feeling well.

I asked his nurse if they ever gave him some acid reflux meds, but it turned out his doctor wanted to "wait and see if it was a fluke or really something happening". So I asked for the nurse practitioner to come by. I explained to her that both of my other children had to start taking medicine for reflux around the same age, and that he was clearly miserable and I insist he is given something. As I told her this he gagged and shot acid again, and thankfully after seeing it she agreed and told me she would tell the doctor he needed something.

His doctor agreed to give him some prilosec, but also wanted to take a lung secretions sample, urine sample, blood culture, and start and IV for antibiotics as well. Because if he's acting so out of the ordinary, we'd better wait until the end of the day, and then check for everything under the sun as well... (catch my snark there?)

I'm actually really proud of him. He has had three x-rays, a huge throw up, continual acid reflux, and then a catheter inserted for a urine sample (not fun to watch), suctioned several times in a row, poked a few times until they got an iv, and 2 cc's of blood drawn for cultures (even worse to watch) all right after the other - and he didn't decompose once! He turned purple when they did the NJ tube, but that's expected from all babies. He had all those other tests done one after another with no break in between, and he contained himself. He was cranky and grimaced and was clearly stressed, but he didn't bradycardia or go purple once. A month ago even one x-ray would send him into a purple crying fit and he would need an entire day to recover. Even with everything else going on this is a good sign!

But in spite of being excited over that, I'm feeling very frustrated and upset tonight. I can't believe that I had to fight a doctor to give my child some medicine for acid reflux today. They are so quick to pump him full of every other medicine under the sun, but when he's sitting in his crib miserable and throwing up, I have to insist they give him something for it. Acid reflux is perhaps the most normal thing that he has experienced, and it's like pulling teeth to get them to do something about it. And in order to give him some prilosec they have to in turn get a lung secretion, urine, and blood sample? It boggles my mind and ticks me off!

Needless to say moving to another ventilator is not going to happen today. And I really think this is only acid reflux and he doesn't have some other weird bug or infection. When we left the hospital he was nice and calm and bouncing back quickly. I myself am feeling very high-strung from the day's events and probably won't get much sleep, but alas, what else is new on that front?

Being grouchy and rightfully so. 

May 03, 2016

Meeting Little Brother

Today was a very special day for our family. We've been anxiously waiting for the flu season to be officially over so that the girls could meet their brother. When they announced it as over with this past weekend, we couldn't wait to surprise the girls! They have been very patiently but anxiously waiting to meet him. 

We have done a lot of prep talks ourselves, but the Child Life Specialist team did an even better job than us. Before going in to see him, we had a little class for the girls. They brought a whole bucket of medical supplies along with pictures of Aiden, and showed the girls all the equipment on him. They let them touch and feel everything, and then pretend played on little dolls with the equipment. Melodie was enthralled with everything and wanted to know what each item was for.

They also gave the girls a little heart and quilt to give Aiden. Melodie and Lydia got to write a message and draw pictures on it for him beforehand. They loved getting to decorate them and were so excited to give Aiden their special "love blanket and heart". Melodie drew a picture on his quilt of the three of them "under a blanket and watching a show together while cuddling", and deemed that as the first thing she wants to do with him. Lydia drew scribbles everywhere while reciting "I love Aiden" over and over again. 

We purposely timed the meeting after Aiden received his methadone and was nice and sleepy, but I was still a little nervous bringing them back. I wasn't sure how all three of them would react. I was pleasantly surprised when the girls didn't seem to notice all of the medical equipment around him and were solely focused on him.

Lydia was very curious at first. She wanted to touch Aiden all over and give him lots of kisses. She especially loved his belly button and had to show Aiden her belly button. But once one of the machines started to beep, she got a little overwhelmed and was glued to my side. I'm very impressed by how well she did. That was a lot for a two year old to take in.

My sensitive little Melodie did great as well. She is an old soul and very emotionally mature for her age. As we've explained to the girls about Aiden's dwarfism and why he's in the hospital, she's gotten emotional before. So I was especially nervous about her reaction. But she did great, and was so enamored with him. She went on and on about how cute and little he is. (And don't let the angles of the photos fool you, he's pretty itty bitty still!) At one point she started telling him that she loves him and wants him to get better soon, and I could see her emotions were finally surfacing and she was holding back tears. But as this was happening, Aiden opened an eye, looked right at her, and reached his hand out to her. What a tender moment they had. And of course tears filled my eyes as I got to witness it.

Although Aiden was pretty sedated, he wiggled his hands and legs to our voices. Even his CO2 levels and heart rate dropped a little. The love between the three of them was very real and very present. You could truly feel it in the air and I know Aiden very well realized he was surrounded by his sisters. 

It was an amazing thing to witness and I'll cherish these memories forever.