the balance of life

Anyone who has ever had a bad cold knows there are a few days when you simply feel like you were hit by a freight train and you may even utter the words “I feel like I’m dying”. Any parents knows that watching your child suffer from a bad cold is simply torture even if it is the best snuggle time in the world. Now imagine the possibility of dying from a simple cold to be very real and the person affected is your 10month old child. That’s the cards we’ve been dealt here. The last week, and especially the last three days, has been nothing short of hell. It’s bad enough when your child has a rare genetic disorder that makes him dependent on a life support machine because his own breathing capabilities are simply not sufficient enough when awake and are lacking completely when sleeping. Having a bad cold however drives that fact home just a bit more as if we needed a reminder how fragile he can be with any minor illness. This cold is taking away his awake spontaneous breathing altogether. The simple action of adding water to the ventilator’s humidification chamber, which requires us to temporarily disconnect him from the ventilator for just a few seconds, makes him turn blue so quickly that even the pulse oximeter can’t catch up and get an accurate timely reading. He is so miserable and in so much pain thanks to a nasty cough and sore throat that he constantly tenses his body up. Crying or not, that overall body tension even causes his airway to tighten up so that the breaths provided by the ventilator are sometimes insufficient and we have had to ambu bag him for hours to get enough volume into his lungs to keep the co2 down and the blood oxygen level up. Despite holding him continuously, he was so uncomfortable two days ago that he just couldn’t take daytime naps and we had to give him Ativan, a sedative, to allow him to get somewhat of a restful night’s sleep. Yesterday, nothing would calm him down and the ambu bagging was going on for hours. And since our nurse was out sick too, picture me sitting on the sofa with Wyatt lying on my chest. I’m holding him with my left arm and ambu bagging him with my right arm while timing out each manual breath so that I can still silence alarms and turn on his feeding pump. In the mean time, my three year old is bouncing around on the sofa next to me begging for my attention and all he wants to do is play with Wyatt. Priorities, ensure your 10month old keeps breathing or making your three year old a sandwich? You learn how to multitask very quickly and thankfully we have plenty of handy snacks around fulfilling the three year old’s need for independence… We were running out of options quickly with Wyatt because he was already on 3L O2, increase ventilator settings and still he kept desatting and throwing episodes.  We knew that if we have him admitted to the hospital they would just stick him with an IV which requires several attempts since he is a very hard stick and then they’d sedate him for a few days until he’s better. Well, we practically have a home PICU, are now thoroughly trained in all sorts of emergencies regarding Wyatt, know more about Wyatt’s specific needs than I could ever explain to a doctor in just one day,  and we can administer sedation through his G-tube without getting him more stressed out being surrounded by doctors and nurses. So as much of a guilt trip as this is, we knew we had to basically knock him out with sedation for a few days to let his body rest and not compromise his breathing/oxygenation any further. Since Ativan has shown mixed results with Wyatt when given more than one day in a row and we used up our last dose the previous night, Pulmonology called in a script for Chloral Hydrate. Supposedly the drowsiness side effects wouldn’t be as long lasting with Chloral Hydrate vs. the Ativan and it would only take the edge of and make him a bit more relaxed. So we gave Chloral Hydrate a try hoping it would work better than Ativan with less side effects. Holy Coconuts, what a messed up drug that is. You could definitely tell when it was starting to kick in because his eyes were losing focus. But then imagine the incredible hunk stuck in a 10month old body without any control or coordination over his arms or legs. He was fighting the drugs so bad and getting so angry. He wanted to cry but the sedation wouldn’t let him. It took over 15 minutes for him to finally give up fighting but he still managed to throw a few episodes before then. Even after he fell asleep though, he was restless. And when he woke up after only 1 ½ hours of sleep, he was frantically grabbing things to chew on. It was insane. While I don’t like Ativan either, I think I definitely prefer it over Chloral Hydrate. Either way, it seems so wrong to be putting your own child through all this even when you know, the alternative would be worse. How I wish Wyatt would just be able to cry all day like you and me can. I would pay for that annoyance over this life or death scenario.

short update

I know I am not usually one to be short and sweet on here but a lovely cold is kicking my butt right now so here’s just a quick update.

We met with ENT (Ear, Nose & Throat specialist) on Friday and have decided that while Wyatt’s stoma site is functional from a ventilation standpoint, it is definitely not normal and needs to be reconstructed at some point. Doing the procedure has its drawbacks of course as it will be similar to having a new trach in regard to cleaning and recovery time and it will require 3-4 days of hospitalization post surgery. However, the current “Panhandle” shaped stoma site (vs a normal round appearance) is creating an air leak that shouldn’t be there and the two areas of additional skin growth around his stoma site often get irritated. The way the procedure works is that after anesthesia kicks in, they would intubate him through the mouth to get a clear view of the stoma. They would then use the existing stoma but tighten up the area around it as needed, preserve the good tissue as much as possible and remove the excess skin growths. After surgery of course, there will be stitches again and the first trach change I would presume has to be done by ENT before discharge. There is no urgency to doing the procedure but we feel strongly that it needs to be done sooner rather than later and having the excess skin removed should provide more comfort to Wyatt and reduce the risk of infection and inflammation. The lead time is approximately 4-6 weeks so most likely it won’t get scheduled until June. Since Wyatt also needs his yearly MRI of the abdomen and chest done with sedation, I’m going to try my best to push the hospital to do the MRI during that same hospital stay.

Some other updates… While Wyatt has had some prolonged episodes that ended with seizure like symptoms on occasion, probably due to the prolonged lack of O2 to the brain, I do have some great news. Purely by accident I discovered a way to prevent 90% of his episodes. We had already figured out that most of his episodes are behavior linked by now. So one day I got so frustrated with him knowing he was doing it on purpose and he had already shown me two back to back full blown episodes that I decided screw this, he’s not going to rule this house. So I started bagging him as soon as he started to cry and made that face like he’s trying to stiffen up and throw yet another episode. And what do you know, that little stinker stopped crying. His skin still turned a little blue but he didn’t go below 60s on his SATs, whereas his bad episodes can go well into the 10s, even to the point of reading 0. So that was a huge victory for Mommy and an eye opener that we had finally found a way to win this battle of willpower with him. The game was on from that point forward. Now he has to go to bed and settle down by himself even if it means we are bagging him for an hour to prevent episodes before he finally gives up and goes to sleep. That look on his face was priceless the first time we laid down the law and put him to bed still awake. He gave us such a pity look. He knew exactly what he was doing and we had to prove to him that we are just as stubborn. Two weeks into this method of madness, he is getting the point and even has had days now when he will go to sleep in his own bed without a fight. That said however, the stranger anxiety is in full swing here though. He will not go to anyone else but me and my husband right now. We can’t dare have a nurse sit next to him without one of holding him and he sometimes even throws a fit for Grandma. I hope that phase passes fast because it’s rather annoying. And just to show how much Wyatt needs to be in charge, yesterday he proved that when he wants to he can eat by mouth just fine. After all the struggles and failed attempts to get him to eat by mouth over that last few months, yesterday he completely voluntary took 20 bites of baby food from a spoon by opening his mouth on his own and even signing “more”. He had never done that before. And he did all that despite the fact that he’s fighting the same cold as me right now. Wyatt, Wyatt, Wyatt. I can’t wait to see what a handful you will be once you can actually walk and sign a few more words.

Back to bitching

Alright, my last few posts have been quite cheerful and while I have been able to handle the daily stress a bit better lately, I have to get back to my reason for keeping this blog – therapy. So let’s get back to today’s episode of “What’s annoying her now?”

Today’s answer is home nursing. It’s been a little over a month now that we have reenlisted the help of nurses to assist with Wyatt’s daily needs. We are approved for 16 hours a day and chose to apply those hours to daytime care only. We have previously established that night nursing is more of a hassle than actual help to us because Wyatt sleeps so much better with us in our room. It just didn’t work out for our family to have Wyatt be watched by a nurse at night in his own room when it only led to him getting woken up frequently, then thinking it’s party time for several hours and throwing even more episodes than usual. In our room he now actually sleeps all the way through the night most nights. Is it ideal that we don’t have night nursing? That’s a simple “no” because there is the very real risk factor of us sleeping through or not responding properly to alarms in the middle of the night. But our family made the decision that the risk of our potential lack of response outweighs the risk factor of the potential short and long term consequences of Wyatt having an increased number of cyanotic episodes. To some doctors that decision sounds irresponsible; to us it has been a huge improvement in Wyatt’s overall daily behavior and therefore treatment. That said, once my inability to deal with the daily stress hit, we decided we need to try to get as many of the daily 16 hours covered as possible to try to find some relief. While we have found four good nurses so far, unfortunately only two of them have been put on Wyatt’s regular weekly schedule. I have spoken with our case manager at the nursing agency, as well as their staffing manager several times. Our case manager has yet to show up for her monthly visit to check on things and restock all the nurses’ paperwork, as well as pick up the stack of old paperwork. I had to make it clear to both of them on several occasions that sending me a nurse just to fill a time slot was the opposite of helpful. It takes a lot of time and effort to train a nurse on Wyatt’s condition and care and to also have Wyatt get comfortable enough with that nurse to even let him/her hold Wyatt. That doesn’t happen in just one shift, especially not at Wyatt’s age of 10months old when stranger anxiety hits full force. In order to find a nurse that would qualify as a good fit though, I unfortunately have to go through the hassle of having them come for a shift to see how they do, especially how they respond to Wyatt’s lovely episodes. Still they keep sending me fill in nurses who have no availability to stay on long term. And trust me, to save everyone from agony, that’s one of the first questions I ask the nurses when they come for their first shift. Well, let’s just say the last few weeks have been challenging to say the least. I’m done seeing my share of nurses who only went into home nursing because they couldn’t hack it anywhere else. I personally know some great nurses so I know they are out there but man, the scope of what I’ve seen lately has been right out of tragic comedy, except it gets old very quickly and I’m not laughing anymore. One nurses came to orientate, talked the big talk about his experience level, never asked questions or said that he wasn’t comfortable, and then walked right out after only three hours of seeing multiple episodes. You made another one run, good job Wyatt. Then you have the paperwork pushers who will write pages after pages of patient progress notes and logs while never lifting a finger or even looking up long enough to know what progress was truly made by the patient that day. We have also had the ones who don’t do any charting in their entire 8-12 hour shift, don’t help out with anything unless directly asked to do so but then make up stuff to make their paperwork look good at the end of the day. Some nurses simply lack the ability to interact with babies yet they stay in pediatric nursing. I don’t get it. And finally yesterday evening, we had the one with complete lack of common sense who insists on hovering over you at the worst possible moments, yet not doing what needs to be done until it becomes pointless. Let me give you an example of last night. She asked a lot of questions, took a lot of notes and kind of just sat back and watched. I figured, ok, she has to figure out how we do things first and warm up to us, no big deal. By late afternoon however she has taken up our entire table on the back porch for over 2 hours to transfer her notes from her notebook to the actual paperwork required by the nursing agency while I’m sitting there holding Wyatt, suctioning him, playing with him and keeping an eye on the other three kids while my husband was cooking dinner. Then when she got the hint that we were ready to set that table for dinner, she asked to switch seats with me to use my side table so she could finish her charting. I politely informed her that I had to stay next to Wyatt to keep an eye on him and that she is more than welcome to do her paperwork inside the house as Wyatt will be joining us at the dinner table and we have plenty of eyes on him. She rolled her eyes at me seemingly uncomfortable to be out of sight from Wyatt (even though she had yet to interact with him) and sat down on the bench a few feet away. After dinner my seven and ten year old carried the plates back into the kitchen and accidently dropped and broke a glass plate that shattered into hundreds of pieces all over the kitchen floor. My husband was holding Wyatt so I ran into the kitchen and see my kids panicked standing in the middle of broken glass barefooted. I tell them to not move, I get my flip-flops on and carry them one by one back outside onto the back porch so I could clean up the glass pieces. What does the nurse do? Totally oblivious to what had just happened even though she saw, heard and even commented on the whole drama, she waltzed right into the kitchen walking straight through the pile of glass because it was getting close to 8 o’clock and she wanted to get Wyatt’s milk ready. I was stunned. I couldn’t believe my eyes. I didn’t even know what to say. I loudly announced that NOONE was allowed in the kitchen until I was finished cleaning up the hundreds of broken glass pieces. In the middle of still cleaning up the mess, she asked me again if she wanted me to get his feed ready now. My blood pressure was starting to rise. I calmly told her that we are holding off on the feed until after I was finished cleaning up the glass pieces, then we will give Wyatt a bath and then we will hook up his feed. Not even two minutes later, she asked me the same question again. At that point I just snapped back at her nd said “No. Bath first, then feed!” Around 9pm when we had finished Wyatt’s care and all the other kids were already in bed, my husband was holding Wyatt on the sofa trying to get him to go to sleep. Louder than she had spoken all day, the nurse of course had to ask another question right as Wyatt was almost asleep, which then woke him back up and mad him so mad that he went into an episode. Another 30minutes later, again writing up more paperwork, it suddenly dawned on her to want to clean out the suction canister right as the suction bag is already hanging on my shoulder and I’m heading up the stairs to get Wyatt to bed. She actually came up behind me as I’m walking with the bag towards the stairs and tried to stop me by holding onto the bag. What the heck? I told her not to bother; we’ll just clean it in the morning. Common sense apparently was not in her genes. I couldn’t wait for her to go. Normally we have the nurses leave whenever Wyatt goes to sleep at night because that’s when we like to go to bed, too. Unfortunately, this nurse though being yet another fill in didn’t come in her own car and was unable to get a hold of her ride until the end of her shift. So I had the pleasure of hanging out with her until 11p… These are the moments that make you want to pull your hair out and make you wonder whether it’s truly worth it to have home nursing in the first place. Yes, on Wyatt’s bad days it’s nice to have a second person there. And there are days where we are simply exhausted. But then again, particularly on Wyatt’s bad days, he doesn’t want anyone else to take care of him. Even with the good nurses, it’s not all smooth sailing either. I have a different parenting approach than they do so we sometimes clash for that reason alone. We don’t treat Wyatt any differently than we did our other three kids when they were his age. We like the prolonged snuggle time because we know soon enough he will be at an age where those moments will start to fade away. So having a nurse constantly ask me whether I want them to hold him gets very annoying. I’m sorry I’m not keeping you busy enough but I will never be the parent to just hand over my kid and let you raise him. I like my time with Wyatt and I even like doing most of his care. Somehow though most nurses have a hard time accepting that they are just there to be my second set of hands. It’s a personality clash I guess. The other big issue is the handling of Wyatt’s episodes. Wyatt has learned to use his episodes to his advantage and 50% of the time now he uses it for attention rather than when in discomfort only. One of our good nurses is so set on not letting him have any episodes at all during her shift that she will pick him right up at the slightest sign of a grumpy face. I on the other hand will first try to distract him, remove him from the situation, play a different game or simply tell him no before resorting back to being stuck on the sofa all day holding him. It drives me nuts that she does that and only reinforces his wrong approach to getting attention. The same goes for the regular CO2 checks. They are not my favorite part of Wyatt’s care either but they need to be done because Wyatt’s CO2 levels are the primary issue and there are no other ways of knowing where he is at any given point in time without objectively measuring. Our CO2 monitor however requires us to disconnect and reconnect Wyatt’s ventilator circuit periodically to place the CO2 monitor line. It cannot be left inline with his circuit and therefore this procedure has to be done for each spot check. The nurses however are so scared they will wake him up when trying to do a spot check while he’s sleeping that they have started to forgo the CO2 checks altogether. I have told them that it has to be done otherwise we don’t know when he’s out of range and what ventilator setting adjustments need to be made. I have even shown them some tricks on how to minimize the risk of waking him up. Still I have to constantly be on them about doing the spot checks and it’s starting to piss me off – excuse my language. This is not something that we can slack on. Too low or too high of a CO2 level both have neurological consequences. Checking his CO2 is not something we can skip or take our chances with. It also cannot be predicted strictly based on Wyatt’s behavior whether we think he’s in range or not. Objective measuring is the only way to know where he’s at and when to intervene. Some days I feel like such a broken record and I get so frustrated with nursing. All the reasons why we stopped nursing before are coming back very quickly. I hate having to get up at a certain time every morning to let the nurse in or not be able to get to bed whenever I want to because I still have a nurse sitting in my house. I hate having to be back home at a certain time because it’s the start or end of a shift. I can’t stand having to make numerous phone calls a week just to get all the doctor’s orders updated for the nursing agency when half the time I need to make vent or medication changes in the moment without a new doctor’s order. Keeping up with everyone involved with home nursing is usually a bigger stress factor than Wyatt’s daily care. I’d rather do it all by myself because then at least I wouldn’t have to explain everything I do and I’d know that it actually gets done. It’s such a no win situation.

a perfect day

Yesterday was truly an AWESOME day. We are starting the month of right. My intention was to have a good old family breakfast around 9am Sunday morning so we invited Grandma and Grandpa over to join us. I figured on a day when my husband is off, Wyatt (who sleeps in our bed) tends to sleep in a little longer. So we arranged for the nurse to come at 8am instead of 7am hoping we could all sleep just a bit more. And sure enough, it almost worked. Wyatt slept through the night, woke up at 630am with a full blown episode just to keep us on our toes, but then went back to sleep till 730am. Unfortunately Wyatt was still really sleepy when he finally got up and didn’t want to be put down. Therefore, my plan of having breakfast ready by 9am wasn’t going to happen. Amazingly enough though that turned out to be good thing. I had the privilege to witness my family in action in what can only be described as a rare occurrence. Everyone worked together as a team to make this breakfast happen… and wait for it… without arguing. It was breathtaking. Oh, I probably shouldn’t use that word - just kidding. It was really cool to watch. Everyone did their share of picking up around the house, setting the table out on the back porch and cooking the food. And when it was time to sit down and eat, even Wyatt was contend with the nurse for a little while just an arm’s reach away from us. Afterward the three boys tossed the football around with Daddy in the backyard while Grandma got to sneek in some snuggle time with Wyatt. We even surprisingly succeeded to keep Wyatt awake and entertained until his lunch time feed. The two big boys then got to go on a ride in Daddy’s mustang while the two smaller boys took a well deserved long nap. The afternoon and evening concluded with water hose chases and throwing burgers on the grill for dinner. It was as perfect of a day as we hadn’t had in a long time.