still waiting...

August 31, 2011

The medical system is so screwed up, I don’t get it. Wyatt has been ready to go home for over a week now yet he has to continue to stay at the hospital because the paperwork for private home nursing is not processed yet. He has been approved for Medicaid for a little while now (secondary to our private insurance) but the private nursing care (not paid for by private insurance) has to be approved separately by Medicaid. It’s been a couple weeks now that we’re waiting on that approval. Nobody seems to care that it’s costing us, our private insurance and Medicaid thousands of dollars every single day just to continue to hang out at the NICU and wait. I mean, yes, we as the parents could decide to raise a stink and get him discharged now. But then we are essentially refusing private home nursing care and will automatically get denied for that much needed service because discharging him now without private home nursing care approval would be a discharge against doctor’s orders. Strictly from the financial standpoint for insurance and Medicaid, it makes no sense that such an approval would take that long. I was even told by some people not to worry about the financials since we’re not directly paying the bill. Wrong. Maybe we’re not paying for it now out of our own pocket but we will in the long run. Private insurance has a lifetime maximum benefit and each unnecessary day spend at the NICU is quickly getting us closer to that lifetime maximum. It’s so frustrating. I can’t bring my son home yet because of bureaucracy.

On a positive note though, Elaine, our insurance NICU discharge planner is amazing. She, with the help of HR at my husband’s work, managed to get the CO2Monitor approved even though it’s normally not covered by insurance. And to top it off, she also used her contacts to get a Pulse Ox donated to us. Despite all the struggles, we have a team of good people working for us behind the scenes. I’m so grateful!!!

Here are a couple of pictures of Wyatt's new downstairs bedroom, a.k.a. his "home NICU"

Overwhelmed by medical needs

August 26, 2011

Now I know why they say that it hits you like a ton of bricks. I was so focused on making sure all the key people are doing what they’re supposed to do to get Wyatt the best possible care and to get him home as soon as possible, I never had time to sit down and let it all soak in. With every road block we faced, I may have cried for a few minutes but then immediately went into damage control mode. I stayed organized, did the research, made sure every specialist involved did their research, double and triple checked everything for everybody. And now here we are. Almost everything is lined up for Wyatt to come home and we’re getting our training on all his medical equipment. I knew all along how much equipment and supplies he uses daily. After all, I went to the hospital every day to spend time with him and practice some of his care. Yet for some reason, going 100mph every day, it never really sunk in. It always felt more like I’m taking care of somebody else’s baby. I kept so busy, I never allowed myself to give in to the grief, self-pity or fear… Today that changed. Now I feel lost, guilty, angry, and sad, and I simply want to run away from myself. We just got done with the 4 hour training on all the medical equipment and I’m suddenly overwhelmed. I'm not worried about the how to take of Wyatt on a daily basis because I've been in the hospital with him daily for 12 weeks now. But there are so many medical supplies, it's hard to keep track. I thought of myself as being very organized and proactive before. Keeping up with monthly medical supply orders though will take me to a whole other level. Just to give you an idea... There is the ventilator with the humidifier and O2 concentrator which both have different attachments you have to change out for home use vs. travel to appointments and such. And then the tubing and wires have to be changed every so often, and certain components have to be cleaned on different daily and monthly schedules. The ventilator also has a back-up battery for home use in case of power outage and another one for travel use.  There is a heart rate and apnea monitor combo that he needs to stay attached to everywhere we go and also a suction machine with all its one time use tubing that we always have to have with us. Then there's the oxygen tank with the Ambu bag for emergencies that has to go with us everywhere we go. There are supplies for daily trach and G-tube care, and of course the trachs themselves which we have to change at least every 2 weeks. There is the feeding pump and daily use feeding bags. And let's not forget the nebulizer for breathing treatments when needed. And we haven't even gotten the CO2Monitor yet... How we will ever leave the house for all his specialist appointments is beyond me? It'll take an hour just to get loaded up. My car seats seven but it's only a relatively small SUV and all his medical equipment has to be stored on the floor while riding in the car. All of his appointments definitely have to happen with someone else watching the other kids while a second trained adult (preferably a nurse) is in the car with us going to and from appointments... I have to remind myself not to panic right now because I know it's a matter of practice and getting more comfortable with everything over time. Seeing all this equipment in our house right now though is just another reminder that daily life will never be as simple again as it used to be. I'm looking for that button to hit that will make everything ok, that will fix him. I want this nightmare to be over with. I want him to be normal and healthy. He looks and acts like a normal baby but with all this equipment we're constantly reminded that the next second could turn into a life-threatening emergency without any warning. There is no cure (yet). He's not going to outgrow this. CCHS is for life. He'll always need this kind of equipment just to breathe, to survive. We're supposed to protect our kids from any harm and it hurts to know that I can't make this go away. I wish it was me and not him.

almost home bound

August 24, 2011

My apologies for the delay in updates. After four weekends of continuous construction, we are finally done with Wyatt’s new downstairs bedroom. He probably has the best room in the house now. Putting up walls and doors, and installing lighting and wood flooring from 8am to 10pm Friday through Sunday for four weekends in a row...let's just say, we're glad it's done. We’re still moving in furniture and decorating but the manual labor is done. A huge THANK YOU to everyone who helped out with this big project!!!

To sum up the last week, I play phone tag daily to make sure people are not dragging their feet because Wyatt is officially ready to be discharged!... Hold your cheers though. We’re still waiting on home nursing approval from Medicaid - hence the daily phone tag. Wyatt was finally switched to the home ventilator last Thursday and he has been adjusting really well without complications. From a medical standpoint, he’s no longer fighting bacteria in his trach (although they’ll always be in his trach to some degree) and he’s now cleared to go home. We’ll get our 4 hour long medical equipment training this Friday morning at our house and all medical supplies will be delivered. Then in the afternoon we have to head up to the hospital to do our second trach change. I did one on the 19^th so now my husband has to do one. And then we’ll stay the night at the hospital to room-in with Wyatt. It’ll kind of be like a practice run of us taking care of him all night by ourselves with the nurses only coming in if needed. That’s all we have left to do from our end before discharge. The only thing we’re waiting on now is for Medicaid approval of the requested 24hour home nursing care. It’s kind of like rolling dice; there are no guarantees how many hours they’ll approve. And the way things have been going, I’m ready to fight if needed. Wyatt is 24hour ventilator dependent and has several daily blue spells where he holds his breath until he passes out (part of CCHS). During those spells, there is nothing you can do but wait for him to come out of it. Not even the ventilator can breathe for him at that time because he completely claps down his airway, cramps up his whole body and turns dark blue. Once he finally takes a breath again and his body relaxes because he passes out, that's when we can give him extra O2 if needed so he recovers faster and brings his O2Sats back up. I’ve seen it often enough now that I don’t panic anymore but it’s still scary and those blue spells can happen at any time for no apparent reason. That’s why we really need 24hour nursing. I hope we get an answer by this Friday so Monday’s tentative discharge date won’t need to be pushed back. Another road block we’re running into is that the Pulse Oximeter and CO2 Monitor are not covered by insurance. We’re still trying to fight for it but it’s another one of those uphill battles. The American Thoracic Society clearly states that for CCHS patients both monitors are necessary to have an objective way of measuring O2 and CO2 levels since CCHS patients lack the ability to recognize or respond to low oxygenation and/or high carbon dioxide levels in the blood. However, because most patients on ventilators do not need a CO2 Monitor, our request for one is not considered “the standard” by insurance. I can’t tell how tired I am of hearing that word, the standard. My apologies that our child’s needs do not fit “the standard” according to insurance rules and regulations. He is not the usual ventilator case. He will not be able to wean off the ventilator over time. He will not be able to tell us when his O2Sats drop and/or his CO2 rises. And most importantly, O2Sats and CO2 level do not go hand in hand. His O2Sats could be perfectly fine but his CO2 is still high and requires intervention, which is very common for CCHS especially during sleep and could even be an early indication of upcoming sickness or injection. Without a monitor, we have no way of knowing when that is the case though. So yes, our son does not fit “the standard” but his needs still need to be met… This constant fight is so exhausting. Maybe my German stubbornness and expertise on bureaucracy will pay off - at least that’s what I’m hoping for. Maybe if I get on their nerves long enough by calling them back every single day, they’ll eventually give in just to get rid of me. I must say though, our insurance discharge case manager is awesome and tirelessly working on it. I hope she can pull some stings.

On another note though, school is back in session for my two oldest boys and I must say, it’s nice to have a little bit of a routine again. Wyatt is not home yet so I still have to drive back and forth to the hospital but it’s more of a set daily routine now again. My oldest two boys were so ready to go back to school and see their friends. All summer long it’s been all about what’s going on at the hospital and they also went through some rough emotional roller coaster rides. They often got angry (and still do sometimes) when it hit them that they didn’t get to spend the summer with their baby brother or didn’t get to do all the fun things with us like they had planned. It breaks my heart to know that we couldn’t protect them from also going through all this worry and stress. We have a good support system that took over and provided them with as much fun as possible this summer but we as their parents were rarely ever home. And even when we were home, there were the phone tags, emails and home construction going on. Our kids needed to be able to just be kids again and school is providing that for them. Plus, I now get to spend quality time alone with my 2 year old at home again and catch up on some snuggles from him. Every now and then I get lost in the moment watching my 2 year old breathe when he’s napping as if trying to make up for what Wyatt can’t do. It’s bittersweet and makes me cry sometimes. The moments when your baby or toddler is just drifting off to sleep in your arms is supposed to be so precious and comforting. For Wyatt the most dangerous time is right when he’s falling asleep and also while he’s sleeping. It’s hard to not get lost in wishing how things should have been. But I’m confident that we’ll figure out how to get snuggle times with Wyatt, too even if he has equipment in tow. His smile alone just makes it all go away; I don’t even see the trach and the ventilator then. I want him to grow up knowing that he’s not defined by CCHS. He can still accomplish anything he sets his mind to. There are no limits for him, he has to know that – we all do!!!

THANK YOU

August 16, 2011

Today is a day of reflection. These last 10 ½ weeks have been filled with such a range of emotions and so much change had to happen in that time frame, it’s hard to comprehend. The roller coaster of Wyatt’s health seems to have slowed down a bit thankfully, but the roller coaster of all the life changes is just starting. While I can’t possibly thank everyone who has kept us sane in these last couple months, there are some people who I definitely need to mention.
Kaleen - I first and foremost want to thank you! You and Rhonda are the reason that Wyatt is alive today. Your ever ready approach to the unexpected is what saved his life. I’m forever grateful! I know you’ve had more difficult cases following Wyatt’s birth but have no doubt, you have a gift and you are doing exactly what you were meant to do!... Rachel - You’ve been Wyatt’s best advocate when I can’t physically be there. You have taken his diagnosis as an opportunity to learn about this rare disorder and have had my back every step of the way. You have gone above and beyond to make sure Wyatt receives optimal care. You’ve also kept me sane. I can never thank you enough!... Elaine - My sincere thank you goes out to you as well for fighting the good fight and helping me to keep tabs on the doctors. It’s good to know that persistence does pay off... To all our family and friends and even perfect strangers - Thank you for everything you’ve done for us. There are so many people to thank, I don’t even know where to start. Please know that all your support and encouragement means so much to us. Thank you for the monetary donations, gas cards, gift cards, building and paint supply donations, meal preparation, thank you for folding our laundry, doing our dishes, lending a hand with construction, providing entertainment for the big boys, lending an ear to vent, a shoulder to cry on, coming to visit, sending greetings our way, or simply following this blog. Every gesture has so much more meaning to us than we could ever put into words... To all my former clients - Thank you for keeping in touch. I wish I had enough time to respond to each and every one of you. Please know that keeping in touch with you has such a deep meaning to me. Even though my business is currently on standstill, your contacts keep that part of me alive. I often wonder whether I have lost that side of me but then seeing your continuous support reminds me that it’s ok. I still have it and I’ll come back to it when the time is right... To the CCHS families out there - Thank you!!! There aren’t many of us but the support we’ve received from the very beginning is amazing. I have met many CCHS families through the cchsnetwork.org and through facebook. I want to thank all of you for all your encouraging words and personal stories. You have helped us see that despite the CCHS diagnosis, Wyatt will still be able to lead a meaningful and full-filled life. Even though we've never met in person, you’ve given us the strength to continue fighting for optimal medical care, no matter what the obstacles. You’ve shown us that a trach is just another fashion accessory and a ventilator is just a big backpack in tow...
To my husband - Thank you for keeping our family together through all this. I know it’s been hard and we all had to take on different roles. But you’re right, Wyatt couldn’t have been born into a better family because we’re strong and stubborn enough to do whatever it takes so that every single person in this family gets what they need and deserve! It may not be Italy but Holland is beautiful, too ;)... To my big boys Cory, Landon and Calvin - I know this is not the summer break you had hoped for but I am so proud of you. The three of you amaze me every single day and I want to thank you for being such awesome big brothers!I love you so much and I always think and talk about you when I go to the hospital... To Wyatt - Thank you for being who you are! You have already touched so many people’s lives and taught us so many lessons. You’ve even brought people closer together and showed us that we should not take one single breath for granted. Your are one amazing little man and I know you will do great things in life because you already have. You are my hero!

Becoming a CCHS Expert

August 11, 2011

It’s been busy around here. The closet has been build, doors have been hung and drywall was put up in Wyatt’s new downstairs bedroom. There is still a lot to be done but it’s looking like a room by now. We still have to smooth out the walls, texture them and then paint them, plus we still have to put in the wood flooring. But hopefully we’ll get it all done in the next couple of weekends before school starts again August 22^nd.

On the hospital side of things, tensions have definitely been running high between me and the Neonatologist. He’s very reluctant to my input and requests and his standard answers are “that’s not a priority for discharge” or “I’m worried you’ll have too much information”. I guess he prefers parents who just sit back and let him run the show. Well, that’s not going to happen. I am making myself an expert on CCHS with the latest research and medical advances, and I increasingly get the feeling that the Neonatologist is getting annoyed by me asking specific questions to which he doesn’t have answers. He has not even followed my request to speak with a CCHS Specialist with whom I have already made contact via email and who has offered to consult on Wyatt’s case. But after a meeting with Pulmonology yesterday, I finally seem to be getting somewhere. They now put in the order for a CO2Monitor which is the established standard for optimal care for CCHS, and they now spoke with the Neonatologist to consult with Cardiology about a 72Hour Holter Monitoring. Long story short, CCHS patients are at increased risk for other Autonomic Nervous System Dysfunctions.  One of those problems are Cardiac issues related to prolonged r-r intervals with sinus pauses of 3 seconds or longer which if present would required a cardiac pacemaker. If undetected, it could lead to sudden death. Typically these problems are seen later in childhood but it is recommended to start yearly or even semi-annual 72Hour Holter Monitoring as soon as possible to have a baseline for future monitoring. Despite me giving him the research and recommendations established by the American Thoracic Society regarding CCHS, our Neonatologist has not looked at them and has been more than reluctant to do this test while Wyatt is still expected to remain in the NICU for at least another two weeks. Needless to say, I went behind his back and got other people involved which ended in the face to face meeting with Pulmonology yesterday. Hopefully their input will be enough to get things going but if not, I’m prepared to go up higher on the ladder. You’d think he’d like parents that actually care and take an active part in the treatment of their child. Oh well, I’m done arguing with him. I’ll just keep stirring up trouble until I find somebody who’s willing to listen and take this opportunity to learn about such a rare genetic disorder. Thankfully, I can pick my own team of doctors after discharge. Me bugging him every chance I get though has finally let him to agree that Occupational Therapy can now try bottle-feeding with Wyatt once a day instead of taking the easy way out and just turning on a pump and using the G-tube. It’s going to be a long process to get Wyatt to relearn to bottle-feed but now he finally has the chance to practice. He swallows in big gulps, has a strong gag reflex (understandable after having a tube down his throat for over a month), and he more so chews on the bottle than sucking but I’m hopeful we’ll get there slowly with practice… We’re still waiting on the home ventilator to be delivered to the hospital. The latest I heard was that it should arrive today. Once the Pulmonologist gives the ok, Wyatt will switch to the home ventilator and it is expected that it’ll take about a week for him to get used to it and to fine tune the ventilator settings, as the home vent does work differently than the hospital vent. This Saturday we’ll be taking our CPR class (and rushing to finish the bedroom of course). Hopefully by next weekend we can get our ventilator training and stay overnight with Wyatt at the hospital as a trial run of us taking care of him. And then it’s a matter of lining up the home health care nurses and all follow-up appointments. Realistically speaking, at the absolute earliest, we’d be looking at the week of August 22^nd

for possible discharge. That’s of course assuming, we don’t have any more arguments with doctors and all insurance matters get taken care of. The insurance story is a whole other issue which I don’t want to go into right now. I’m just keeping my fingers crossed that we can keep the financial impact to a minimum.

Well, that about sums up my running around for the past week. To bring it all back into perspective though, Wyatt is doing awesome. He’s done with his antibiotics and the central line was removed. He’s acting like himself again, holding his breath and turning purple every now and then still when he gets mad, and he even managed to poop sideways out of his diaper yesterday. It was lovely and kind of hilarious.

Progress and frustration

August 7, 2011

It’s been a long week of frustration but also progress.

Progress… Wyatt has been much more stable since the Central Line was put in and his antibiotics were started. He only has a couple more days left on the antibiotics and then we’ll get another culture done to make sure it worked. His secretions are still thick but from what I can tell, they’ve always been like that even before the tracheotomy. Last Friday we interviewed three different home health care agencies and we decided on a local agency that is sort of like a one stop shop. Aside from having experience with CCHS cases and therefore having the knowledge to train our future home health nurses accordingly, this company also has its own Durable Medical Equipment (DME) Company, a pharmacy, and 24/7 Respiratory Therapists (RTs) on call who could be at our house within one hour. Additionally, they offer medical day care if/when I choose to go back to work. Yesterday, the timing was right, too. We received a bill of over $51,000 from the Neonatologist group who has seen Wyatt in June and July. Mind you that number is only the bill for the doctors, not the hospital, specialists, tests, etc. Thankfully, at the same time we received a letter stating Wyatt is approved for Medicaid as of July 8, the day of the application. That made the shock from the bill a little easier. Now I just have to figure out how to make Medicaid retro-active to his birth date.

Frustration… Having done nothing but research and talking to CCHS Specialists and CCHS families, I consider myself very educated about this rare disorder by now. Aside from countless appointments Wyatt will have with countless Specialists after discharge, there are certain tests that need to be done on an at least yearly basis because CCHS children can have other serious complications related to the Autonomic Nervous System (ANS). Trying to get these tests done while still in the NICU though is a whole other story. There is such a lack of communication between the Neonatologists and other Specialists, it is so damn frustrating. And then when I as the parent ask specific questions about CCHS tests and treatments, they act like I’m taking their degree away. I basically have to wave the documentation from the American Thoracic Society in front of them to make the Neonatologists see in writing that I am not just making this all up and Wyatt really does need to be continuously CO2 monitored. Yes, I understand that it is not common practice to send children on a ventilator home with a Co2 Monitor and that those monitors are expensive and therefore insurance companies don’t like to pay for them. But damn it, other kids also don’t have CCHS where high CO2 levels are the main issue and are a daily life or death scenario and where the research backs up the need for such monitors. Yes, I know Wyatt’s heart rate has been continuously monitored during his whole stay in the NICU, 2 Echocardiograms came back normal and a 72Hour Holter Monitoring is expensive. But damn it, several CCHS patients have suddenly died due to undiagnosed r-r intervals with sinus pauses of 3 seconds or longer and a 72Hour Holter Monitoring is the standard for CCHS. So why not do it while Wyatt is still in the NICU for a couple more weeks anyway? Yes, I know Wyatt does not do well with the pacifier. But damn it, neither did any of my other “normal” kids and Wyatt did bottle-feed prior to the ventilator. So why not give him the chance to try and practice again now, even if it is not a determining factor for discharge? Oh let me guess, it’s inconvenient for the hospital schedule because bottle-feeding would mean someone actually has to spend more time with Wyatt while he’s eating instead of just turning on a pump connected to his G-tube… In other words, I get the feeling that the Neonatologist is simply done with Wyatt’s case now that he has a diagnosis and it is clear that there is no cure. Now he just plays the role of the middle man with all the other Specialists and he’s doing a bad job at that… Needless to say, I’m kind of fed up with the bs excuses and I will do whatever I have to in order to get the CO2 Monitor ordered for Wyatt’s home health care, to get the Holter Monitoring scheduled and to practice bottle-feeding with Wyatt again. The time to play nice and attend to the Doctor’s egos is over.

good news... and bad news

August 1, 2011

Damn it! Why do good news always have to be followed by bad news? It’s so exhausting… When I went to visit Wyatt this morning I apparently came at the right time to talk to almost everyone involved in his case. The OT (Occupation Therapist) was there and was working with him to try sucking on the pacifier which she dunked into some breast milk for added motivation. She said Wyatt chews on the pacifier and moves his tongue forward and backward but he does not suck on it yet. Hopefully with practice he’ll get used to it again. The risk of him aspirating is too high right now though to let him try bottle-feeding. Once he shows improvements in his sucking abilities then maybe we can give small feeds a try. However, if it is a coordination issue because of his brain injury, then we may have to skip the bottle altogether and go straight to the cup when he gets older. The feeding issue is one of those many things that we have to wait and see how he improves over time… I also got to talk to his Neonatologist. Long story short without too much medical talk, the earlier diagnosis of a stroke as Wyatt’s initial problem is now ruled out. The findings of the second MRI and Wyatt’s positive development since then do not support that initial diagnosis. There is definitely evidence of brain damage caused by low oxygenation at some point in time, but there is no way of telling when or why it happened. However, the brain damage that could be seen in the second MRI is not as significant as originally thought. Therefore, Wyatt’s risk of developing Cerebral Palsy or any other developmental challenges is most likely lower than original predicted as well. So that’s all great news!... After talking to the Neonatologist, I was also able to talk to the Pulmonologist who has taken over Wyatt’s respiratory care from this point forward. The Pulmonologist went ahead and ordered the home ventilator which will take a minimum of 10 days to arrive at the hospital. Upon arrival, they have to find the best settings for Wyatt on that specific ventilator and make sure that it is the optimal treatment for him. At that time we will then also be trained (in preparation for home care) to use the home ventilator and make necessary adjustments on our own. The Pulmonologist reassured me though that Wyatt will not be discharged until we are comfortable handling all his equipment and care. Once discharged, Wyatt will have monthly appointments with the Pulmonologist and he will need monthly vaccinations against RSV because he is at high risk for respiratory infections and lung disease. The Pulmonologist will be consulting with CCHS Specialists on an as needed basis. The biggest challenges we are facing is what I predicted earlier. There have not been any cases like Wyatt’s. Normally CCHS presents with normal MRI results. Since Wyatt not only has CCHS but also brain damage, his long-term prognosis and treatments are more depended on what the consequences of his brain injury are and how/if they affect his respiratory problems. In other words, we’re back to the phrase that I hate by now “It’ll take time”. But at least the home ventilator is ordered and we are one step closer to discharge… Or so I thought until I received a phone call a couple hours later. From the beginning, the nurses/doctors have had problems placing and keeping IV lines in Wyatt. So his last antibiotic treatments for the two types of bacteria in his trach had to be cut short to 4 days. We were down to the last resort of placing a central line to continue the antibiotic treatments but our Neonatologist didn’t want to jump the gun and decided to do a repeat culture first in the hopes that the 4 days of antibiotics Wyatt did receive were enough. Well, the culture just came back and the bacteria is still present along with white blood cells which is the greater concern. Wyatt will need at least 10 days of antibiotics and the only way to give him those treatments for that long of a time frame is by placing a central line, a surgical procedure… I’m ready to pull my hair out. A central line is our only option but it comes with its own risks such as blood infection. I’m not sure how much more I can handle mentally. With another invasive procedure in mind, I can’t even be happy about the news that his brain damage was not caused by a stroke and is therefore not as extensive as originally believed. I wanted to really enjoy those news for a moment but no, it had to be followed by more complications. Is this ever going to end? The studies say that the first 2 years of life with CCHS are the most challenging. If this is what the next 2 years are going to be like then I’m going to need a psychiatrist who can subscribe me some amazing drugs to cope. As if we don’t already have enough medical expenses. I can’t turn into a mental case now, too. I’m so scared that we are going to reach a point where Wyatt’s little body simply can’t handle all these treatments and interventions anymore. As it is, children with CCHS take a lot longer to recover from anything, even minor things. For every day Wyatt is in the hospital, I’m aging by a whole year. By the time he finally comes home, I’ll be 100 years old it feels like. With the central line being placed either tonight or tomorrow, we have to prepare ourselves for a rough couple of days.