Thursday, September 29, 2011

Close Call

We had a close call Tuesday night. Wyatt is fine now but I still can’t get that image out of my mind…
Wyatt had a good day on Tuesday. He was tolerating the bouncy seat and tummy time better than usual for a good 30 minutes each. We even practiced bottle feeding (a.k.a. chewing) for a good 15 minutes. Overall, his new schedule seemed to be working better for him and us, and everybody in this house had started to get into a good routine… But then came the sober reminder that things can go horribly wrong in an instant. My husband was still at work and I was eating dinner with my other 3 boys in the kitchen while the nurse was rocking Wyatt. I heard the pulse ox alarm go off which usually means he’s either having a breath holding episode or it’s just not getting a good read. When I walked in the room I heard a very distinct and familiar whistle-like noise. Wyatt’s trach had come out and the nurse failed to recognize that noise nor did she check. She just kept starring at the pulse ox waiting for his sats and heart rate to come back up. Turned out, she had attempted to do Wyatt’s trach tie change by herself. That’s why when he had his episode and the trach tie was loose, the trach ended up coming out during his episode probably when he was arching his back. I yelled at her that his trach was out and grabbed the supplies I needed to put it back in. In the nurse’s panic she ended up trying to wiggle the trach back in without supplies unsuccessfully and her hand just got in my way where I couldn’t see the trach site.  I told her to just hold him. Despite feeling a little resistance, I manage to get the trach back in. It doesn’t take long for the site to close off and I almost had to grab the emergency smaller size trach. But thankfully I managed. His sats came right back up to 100 and his heart rate was in the 150s but Wyatt was unresponsive. He had a blank stare, his tongue was sticking out a little with drool around his lips and he was completely limb. Normally after a breath holding episode he’ll have that blank stare while he’s returning to a pink color and his body will be stiff for about 15 seconds. But it was different this time. He was pink already, his number looked great but I couldn’t get him to respond. I gave him additional manual breaths through the vent because I did not want to let him ride on only the 30bpm back up rate his vent is set at And then I called 911 because he didn’t come out of this stare, he was limb. The nurse just kept saying “Why didn’t the vent alarm go off?”. She’s lucky I was more focused on Wyatt than her comments or I would have yelled at her so loud, the entire block would have heard us. I’m not a nurse trained on trachs and vents, and I’ve only been dealing with this for 3 ½ months but I recognize that distinct whistle-like noise. No matter how many times you’ve seen Wyatt’s breath holding episodes and are used to them, you never ever assume he’s just going to bounce right back. You always trouble shoot all the equipment, glaze at the vent circuit to make sure it’s all connected and look at his trach placement. And if he doesn’t come back up like he usually does, you always have to be ready to switch out his trach in case there might be a plug in it preventing him from receiving the breaths. You cannot ever depend on alarms. The pulse ox doesn’t even alarm until he’s already blue because there is a big delay. The vent won’t alarm when the trach comes out because the vent only has a disconnect alarm. Nothing was disconnected though so as far as the vent is concerned, it was still pushing air through. The air just wasn’t going into Wyatt. After the longest 5 minutes of my life, Wyatt finally come back around and started silently crying. By the time EMS got to our house, he was crying and responsive but I wasn’t taking chances. I directed the nurse to just keep holding Wyatt and trying to comfort him while I packed up all his gear. EMS wanted to ambu bag him on the way to the hospital and I had to set them straight on how this process was going to work. Ironically, the same EMS guys that came the day Wyatt was born responded to this call. Only this time they actually had respect for me and let me take the lead. You could tell they knew very little about the home vent. I had to give them the short version of Wyatt’s diagnosis and they got the point that the 911 call 3 ½ months ago after Wyatt’s birth was due to his diagnosis and not as they thought back then because Wyatt was born at home with a midwife. Even on the ride to the ER I was directing them on what to do and I what I needed. I was on the stretcher holding Wyatt in my arms to try to calm him down and the EMS guys made sure to place the vent between my legs so I could see it and work it if needed. Once at the ER Wyatt’s numbers were back in the normal range and I had to explain to the ER doctor to not be too concerned with Wyatt pupils being only minimally responsive as it comes with CCHS.  We were then transferred to Arnold Palmer Children’s Hospital for overnight observation. I must say, everyone at Arnold Palmer was amazing. As the leading children’s hospital in the region, they clearly had some experience with CCHS and were treating Wyatt appropriately (unlike the doctors at Winnie Palmer NICU across the street). It was close to 10pm when we got to APH and by then Wyatt was all smiles again and flirting with the nurses. Since we don’t have our CO2Monitor at home yet, I took advantage of our unplanned hospital stay and requested to put an in-line etCO2 on Wyatt’s vent circuit. He was reading in the low 20s which the RT was a little concerned with but I told them that before the pressure control increase on his vent, he used to be in the 70s. So I was ok with low 20s even though I guess it is considered to be the lower end of a good CO2 range. Weirdly enough, his CO2 was reading higher when he woke up in the morning, it was sitting around mid 30s. The RT said, it could have been reading a little low while he was sleeping because he has a significant air leak through his nose when he’s sleeping so it may not have been a true reading. I don’t know if that’s right or not. I have to trust the RT’s interpretation for now since I don’t know that much about CO2 readings yet. I’ll have to look into it more. By 10am Wednesday morning the attending doctor signed off on the discharge papers and we were back home by 12pm. Having only ridden in the ambulance with Wyatt so far everywhere we went, it took us a little while to get situated in the double stroller and then getting into our truck. But it was a nice first trial run - I’m trying to look at the positives here out of this whole mess. Of course, I had a stern talk with the case manager of our home nursing agency and made it clear to her that she’d better double check that all nurses coming to our house are adequately trained and that they are never to attempt a trach or trach tie change by themselves and that they are never to assume that he’ll just recover from his breath holding episodes. I expect them to always check his trach site and the vent set up during each episode and periodically throughout the day. Quite frankly, after Tuesday night, I was ready to say good-bye to home nursing altogether. I know it won’t be the last time for his trach to come out and it could have happened to anyone but for any nurse to play superhero and attempt risky things like trach or trach tie changes by themselves, that’s just unacceptable. I don’t care how much experience you have and how often you’ve done it one handed standing on your head. Wyatt is a strong kid and he’s managed to wiggle out of his trach previously even with the trach ties being thight. I don’t need superheros. I need nurses with common sense and the mind set to act when emergencies happen… Tuesday night was a close call. I know I can’t dwell on what could have happened if I didn’t step in the room but I can’t get that image out of my mind of Wyatt’s limb body with the blank stare. His sats and heart rate came right back to normal but he just wasn’t responding. There was nothing I could do but wait and hope and call 911. That helplessness of watching your own child go through that and there is absolutely nothing you can do but hope, it is an indescribably horrible feeling… But he’s ok now…

Friday, September 23, 2011

home health care - fun times

September 23, 2011
Yesterday officially marked two weeks home with Wyatt. He has adjusted quite well. I’m amazed by how much he’s been thriving in such a short time. He’s picking up his head now (still a little wobbly at times with all his gear), he scoots around in his crib and reaches for toys until he accidently rolls onto his side, he loves tummy time and prefers to sleep that way now, and he doesn’t freak out anymore when his two year old brother comes running up to him and pretends to be a tiger by growling at him. As you may have heard in the video I posted last time, he is also an expert at pooping sideways out of his diaper as grandma can testify... The rest of us have adapted quite well also considering the mess of home health care. We have come to appreciate why it is even more important now to stand your ground and go straight to the top when things aren’t handled the way they need to be. Getting consistent nursing coverage of GOOD nurses is the biggest issue. There have definitely been a few nurses we could have done without and those few almost drove me to the point of saying good bye to nursing altogether. But then there are the few amazing ones who just have the right balance. The good ones are those that realize that we as the parents are the experts on our child and the management of this disorder, and nursing is only needed and wanted as a back-up. The ones that appreciate that Wyatt doesn’t need hourly assessments or a diaper scale, and when he’s sleeping, you leave him be. The ones that realize that even though we have three other kids running around, Wyatt doesn’t need to be sheltered from them. Wyatt will get used to them coming in and out just as they will learn to understand that when we are busy with Wyatt’s trach care or blue spells, the other kids just have to wait. Just like anyone else who already has kids and then adds a baby into the mix, everyone in the family has to learn to adjust. And I believe that just because of Wyatt’s diagnosis, it shouldn’t be any different. He’s not sick, he has a gene mutation. He shouldn’t be treated any different than any of our other kids. The only minor difference is the endless bottles of hand sanitizer, disinfecting wipes and paper towels spread around the house to minimize Wyatt’s risk of infection and illness. So far we found two good daytime nurses, one of which I hope will become our primary nurse starting in November. She has another patient with CCHS she’s taken care of for 5 years now. Nighttime right now we’re left without nurses since we fired the one that fell asleep. The nursing company is now scrambling to find nurses with appropriate trach and ventilator care experience who are willing to make the 1 hour drive. The actually had to post an ad for a night nurse to try to fulfill our needs. So for now I set up camp in Wyatt’s room at night. My husband usually stays up till midnight or a little later while I go to bed with the kids at 9pm to get some sleep in our comfortable bed. And then we switch. The biggest pro of continuous G-tube feedings at night is that Wyatt sleeps through the night from about 10pm till 6am. I don’t really like the idea of him taking the easy way out with G-tube feedings only right now but Early Steps is coming out next week to do an assessment and get us Occupational Therapy, Physical Therapy and/or Speech Therapy. Improving his sucking reflex is my biggest concern. He chews on his fingers well because he’s teething but the whole sucking thing is a foreign topic to him still. The feeding schedule we have him on doesn’t seem to work to catch him in a playful mood to try the bottle. We’ll see. We might have to change things around. I’m sure that would make the Case Manager of the nursing company very happy. After all, I have to let her know what every doctor said at each appointment, and any changes that are made by the doctor need an order faxed over to the nursing company because the nurses can only go by what the orders say. Even things as simple as Tylenol, which is only given on an as needed basis anyway, they need an order for. I know it’s a liability thing but who’s in charge here. Wyatt is our son and he’s not sick! It rubs me the wrong way on so many levels. She even told us that she’d prefer if we get a diaper scale. Yeah right, we’re done with the hospital protocols. That’s not happening. Wyatt was at 11lbs 12.5oz on Sept 12th and now he’s already up to 12lbs 8oz today and pooping several times a day. I think we have no plumbing or input/output issues to would warrant the need for a diaper scale! Come on.  It’s frustrating to me that there are too many people involved when you have private home nursing. I’m already to the point of not answering my phone anymore 15 times a day. I want to be able to just make an appointment for Wyatt without having to let three other people know about it who then also need paperwork faxed to them. The supply department isn’t much better either. They send me the wrong syringes when they first delivered supplies but because I can’t reorder until October, they argued with me about switching them out. They were also supposed to give me a template of all the supplies with need with the order numbers and prices. I have yet to receive that template so I guess I’ll make my own. And we’re still waiting on our CO2 monitor even though it has been approved for purchase by our insurance weeks ago. But since the nursing company doesn’t carry them, they had to order one. As long as it’s been, it seems like they’re building one… Sorry, had to vent a little.

Monday, September 19, 2011

Fired the night nurse!

September 19, 2011
It’s 2am and I just fired our night nurse. I’m so sick to my stomach right now and my blood pressure is through the roof. Last night my husband went to bed last and specifically told her to leave the door cracked open. (I had told her that previously also). We have glass French doors to Wyatt’s room which allows us to see his crib from the living room and we can also see halfway into his room from upstairs. When I wake up in the middle of the night, I always look down to check on things. I caught our night nurse sleeping in Wyatt’s room with the door shut! She was on the rocking chair, covered in her own blanket, her feet propped up and her head bend over to the left leaning on her shoulder. I was furious and started shaking. She jumped up when I came in the room. Wyatt was sleeping and if it wasn’t for me not wanting to wake him up, she would have gotten it from me. I kept it together though (for Wyatt’s sake only) and told her to leave. She actually had the guts to tell me “I wasn’t sleeping. I was just taking a break and putting my feet up. Please give me a chance.” Are you serious? I saw her and her facial expression said it all, she was lying. I don’t have to see the face to know that she was sleeping. Body language says it all. I was furious and shaking. It took everything out of me not to yell at her. I told her I could not talk to her and she needed to leave right now. She kept on trying to reason with me and I just had to turn my back to her and look at Wyatt. You want another chance? Why, because luckily nothing went wrong while you were snoozing off?  The possibilities of what could have gone wrong, it makes me nauseous just to think about it. He could have moved and his trach could have come out enough to cause a large air leak but not large enough to set off any alarms on the vent and then the breaths he is getting wouldn’t be enough. His body doesn’t physically respond to low oxygenation and/or high co2. It’s not like he would get restless and wake up or start breathing more on his own while sleeping to compensate. Or what if he would have woken up at any time and started crying silently which could easily turn into a breath holding episode. The alarms wouldn’t go off until he’s already blue… I’m so mad at myself for trusting anyone with his care. This garbage makes me want to get a second crib and have him sleep in our bedroom upstairs at night. There are no taking chances, his life depends on it.

Friday, September 16, 2011

no nurse today - not by choice

September 16, 2011
My morning started with getting up at 545am to pump, eat breakfast, get the two big boys ready for school and the 2 year old dressed and fed, all before my night nurse left at 7am.  Not being told until 10pm last night that I wasn’t going to have daytime coverage today, I then left two strong messages to the Case Manager and the Co-Owner of our Home Nursing Agency stating that the lack of timeliness and communication are unacceptable in terms of daily nursing coverage or lack thereof and I also stating that I am not confident that this Agency will be able to fulfill my son’s nursing needs. Once I got that off my chest, my day actually went pretty well. Grandma thankfully happened to be off today and came over to take care of the 2 year old who has a cold. I spend my day with Wyatt and I must say, I enjoyed the uninterrupted snuggle time. With all the hours of phone calls the last week, I didn’t really have time yet to enjoy having Wyatt home- until today. And I have confidence in my nursing skills now. I knew I could do it before but today was sort of like a test. Taking care of strictly Wyatt is not the issue around here though. Taking care of him is a constant go, go, go but I can manage. How I’ll ever be able to take care of Wyatt when the other kids are home and I don’t have help with them, that’s the big question and gamble. I can’t leave Wyatt out of sight because as soon as he gets upset he could silently cry so hard that he has the Smurfs. Someone has to watch him at all times. The Pulse Ox alarm is not reliable. It doesn’t even go off until he’s already blue and then it usually loses signal. The apnea monitor is a complete waste, it never goes off. So unless you’re watching him, there is no warning that he’s about to have an episode. By the time you hear the Pulse Ox go off, he’s already in the middle of an episode and it’s too late at that point to try to calm him down and stop it. It’s hard to watch him go through that knowing that all you can do is ride it out with him and talk him through it. Today he only had 5 episodes; it was a good day… I’m going to hit the pillow now. We thankfully have a night nurse. She’s only a fill in but she’s really good. Tomorrow we again don’t have a nurse during the day. I’m not thrilled about staffing right now. THANK YOU grandma for saving me and taking on the task of entertaining the other 3 kids!!!
tummy time is exhausting

Thursday, September 15, 2011

Finally Home

September 15, 2011
Wow, what a ride it has been since discharge from the NICU last Thursday. I don’t have much time so here is the short version: Sleep deprivation with food and pee breaks being optional!...
His ride home on the ambulance went well. He introduced himself to the paramedics by showing them one of his famous blue spells while being put in his car seat and onto the stretcher. And as horrible as this sounds, it was comforting to know that they saw him have “the Smurf’s” before they started driving. I had to follow in my car so I would have hated to have them panic seeing these episodes for the first time and possibly turning back around towards the hospital. Once on the ambulance, Wyatt apparently slept all the way though. Getting home was chaos – the whole day was chaos actually. There were way too many people all talking at once and handing me paperwork and really I had no idea what the heck was going on. But hey, Wyatt got home, so that’s all that matters. He was actually all smiling when we finally got him into his own crib at home… By now we have learned that the mood of the day depends on the type of nurse we get. The first day, all the nurses were late for each shift which did not sit right with me at all. Since then they tend to show up on time (mostly) but there have been gabs in coverage and I usually find out the day of who’s coming when. Then each shift, it’s a few hours of giving the nurses the scoop on Wyatt’s condition and his likes and dislikes and letting them get comfortable with him. Some nurses you can tell right away, they got it and are not nervous because of “the Smurf’s” and others you know right away, it’s going to be a long day or night and they’re just there for back-up. Hopefully it’ll settle down in the next week or so though and we’ll have consistency in the nurses we get day and night. Right now, I always need someone else to take care of the other kids simply because I don’t trust the nurses yet to adequately handle his episodes and I’m constantly on the phone with Medicaid, CMS, SSI, and all his different Specialists. There are his Pediatrician, Pulmonology, Cardiology, Neurology, Nephrology, Surgery, Genetics, Physiatry and soon they’ll be Early Steps (Physical Therapy, Occupational Therapy and Speech Therapy) and most likely GI and ENT for follow-ups. He has at least 2 appointments each week for the next month and a half and each one of them requires an ambulance ride to and from. It’s quite a scene to watch us get ready and hit the road and then there are the looks on people’s faces to see a baby on a ventilator and rolling into the doctor’s office with EMS as part of the crew. I almost want to get sarcastic and ask those starring parents the question of whether they think they made the right choice of a doctor’s office… but I won’t be that mean, yet. Hopefully most of Wyatt’s follow ups appointments will be a one time deal and then only as needed, otherwise I’ll lose my mind.
Here is a little video... and the doctors were worried about coordination issues, hah.

Tuesday, September 6, 2011

fingers and toes crossed- Thursday is the day

September 6, 2011
What a day. Wow… So I make my usual milk run up the hospital early this morning because Wyatt was supposed to get another follow-up MRI today. I walk in his room and he’s all smiling and being Mr. Handsome as if he knew I needed it. So I went ahead and took advantage and held him. Since I know PT wants him to slowly progress to tummy time, I decided to give it a try to hold him on my chest. Oh boy, I think we started something now because he really liked it. He fell sound asleep and drooled all over me. He started drooling a lot more the last few days and chewing on his hands, so we think he might be teething already. I must say, I enjoyed holding him in that position as much as he did. It’s the first time I was able to hold him on my chest since the day he was born. After a little while I had to put him back down in his crib though because I had to pump. Well, he did not like that at all. He managed to have 4 breath holding episodes in less than one hour. He’s quite good at it I must say. Normally, he has one episode and then is so worn out that he takes a little nap afterward. Well, not today. He just wasn’t happy for some reason, whether it was because I stopped holding him or whether it’s because he’s uncomfortable from teething. Either way, it was just one episode after another. Not even sitting him up or wiping his face with a wet wash cloth worked when normally that would calm him back down. So I gave in and held him on my chest again. Well, just to show you how much he’s really in charge, he stepped it up when I tried to put him back in the crib the second time. He was sound asleep on me again but as soon as I tried to move him back to his crib, he decided to move his head around so much that he pulled his trach out. Talk about my heart rate and blood pressure going up. The vent alarm is going off, his Sats are dropping and all I could hear was an air leak but I couldn’t see where it was coming from. I didn’t even have time to call for the nurse or RT. I put him down in his crib and after a quick glance at the circuit to make sure all tubes were connected, I pulled the polymem out from around his trach and sure enough, he managed to wiggle the trach out (it’s a flex). By that time two RTs were in the room and we scrambled to get one side of the trach tie undone (which is a pain) so we could put the trach back in. And then what does Wyatt do? He looks straight at me with this innocent little face like nothing ever happened. Then, a few minutes later, he has another breath holding episode but this time he’s finally worn himself out enough to fall asleep afterward. So I figured, he’s asleep, I’ve had enough Emergency training for today, I should head home. Wrong again. He’s still sound asleep but has worn himself out so much now that he’s desatting and needing extra O2… I guess Wyatt is just prepping me for what it’ll be like when he comes home. I hope he won’t be one of those kids that holds his breath when he doesn’t get what he wants or worse, pulls his trach out and throws it just to see how fast we can run. It’s going to be a daily party at our house… Well, the MRI was pushed back to 4pm so I did decide to go back home at lunch. And then the call came at 130pm. Private Home Nursing was approved by Medicaid! They approved the requested 24hours of nursing for the first 30 days, followed by 16hours of nursing for the next 30 days, and then 8hours of nursing after that. That works for us. It’ll give us a chance to have nurses as back up while we get in the swing of things, the other kids get used to everything, and we can establish a new routine at home. And then we’ll probably just use the 8hours for night time nurses. So the plan is for Wyatt to be discharged this Thursday. The ambulance is scheduled to pick him up at 1pm. I’m sure it’ll be quite an ordeal to go over all his discharge papers and instructions, get him buckled in his car seat, and then get him strapped onto the stretcher with all his gear on tow. Not sure if that counts as a picture moment but it’ll be unforgettable. So about 48 hours from now, he should finally be home. I’m keeping my fingers and toes crossed.

Monday, September 5, 2011

Depression or PTSD?

September 5, 2011
Now that things are slowing down and Wyatt is stable, it's all catching up to me. It’s been three months of nonstop high stress and I’ve done my share of busy work. I’ve done research, filled out endless paperwork, fought with doctors, played phone tag, etc. And now there’s nothing left for me to do. Wyatt is stable enough to come home but all we can do is wait for the private home nursing approval. It is torture and I think I’m losing my mind. Wyatt was supposed to be discharged last week but that didn’t happen. So now we’re on to another week. With today being a holiday, it’s questionable whether it will happen this week either though. It’s like a nightmare in which you keep running toward that exit sign but for some reason you’re just running in place, getting more and more tired, and you’ll never reach that exit.
When last Friday finished with yet another disappointment of not hearing anything back, something inside me snapped. I broke down. I couldn’t take it anymore. I went into our bathroom at home and lost it. Wyatt was born at home, a perfect water birth in our bath tub - until he just couldn’t breathe and was rushed to the hospital. He was supposed to finally come back home this week. Instead I had to go get our forth monthly parking pass for the hospital. Getting yet another parking pass put me over the edge.  I literally climbed into our bath tub fully dressed, curled up in the fetal position and couldn’t stop crying. It must have scared the crap out of my husband when he came home from work and found me like that. I had no explanation as to why I was in the tub, except that’s where Wyatt was born and then he was taken away from me. Despite my husband trying his best to get me to calm down, I couldn’t even look at him, much less talk to him. I wanted to scream but couldn’t. I just wanted to be left alone and disappear. I actually held my ears closed so I couldn’t hear my husband trying to talk to me. In my head I blamed myself for being selfish for wanting a fourth child and therefore it’s my fault that everyone in this family now has to go through this hell. The pain was so overwhelming and I was desperately looking for a way to let it all out. I couldn’t stand being around myself… It’s Monday now and I can’t explain what happened to me that day. It scares me to even think about it. I know it’s normal to have good days and bad days but my bad days seem to happen more frequently. I get depressed more often now and it's hard to come out of it. My mind is always in the hospital. I can't even enjoy spending time with my other kids. Ironically, I don’t even want to go to the hospital anymore though to see Wyatt but I feel guilty when I’m not at the hospital. When I do finally convince myself to go, I get more depressed every time I see Wyatt because he’s not home yet and someone else is taking care of him.  At this point, I’m just the daily pumping station and milk delivery and even that is not going so well anymore. I’m not sure how much good I’m doing anyone by now. My body is exhausted. I’ve been getting dizzy and nauseous every day for the last week or so and no matter how much I sleep, I can't catch up because I keep waking up several times a night dreaming about things at the hospital. I have a headache every day, all my muscles and joints hurt, and eating has become just a necessity and often gets skipped altogether. To get my mind of things, my husband took me away to an amusement park yesterday (just the two of us) and I was miserable. Half the time I felt like I was going to pass out. I really tried to have a good time but I’m just so mentally and physically drained, my whole body hurts. I really feel like I’m going insane. I can't get out of my own head. Most days I just want to hide from the world, from myself. Just let me disappear. What good can I do anyone if I’m a basket case? I keep being told that I’m grieving the loss of a normal child. The thing is though, I don’t even feel like I had a child. More often now than ever before I look at Wyatt and he sometimes just seems like someone else’s baby in the NICU. Social work keeps saying to spend as much time with Wyatt as possible and do all his hands on care to reinforce that bond. And I do see him every day and do all his care when I’m there but that’s still only a couple hours a day when you have three other kids at home and it’s an hour car ride each way. It has not helped in forming a bond. I get frustrated trying to calm Wyatt down when he’s tired or cranky because I can’t find the words to just talk to him. I don’t know what to say to him. This feeling of detachment is supposed to get better when he comes home. But when is that going to be? How much will I have missed out on by then? Every day that passes is a day we can’t get back. He’s already three months old and his primary nurse knows him better than I do.