Narrowing down the list of Specialists

Here are some updates from last week:

A 72hour Holter was done Mon-Thur last week by Cardiology. They'll call with the result within 10 business days. Unless something abnormal shows up on the Holter or there is a clinical change, we won't need a follow-up until April 2012.

Pulmonology is continuing the monthly Synagis shot until March (which we may need re-approval for from our insurance at some point). No ventilator changes yet until I am able to continuously monitor Wyatt's CO2 levels. Wyatt is still on Pulmicort twice a day per nebulizer and Pulmonology added an order of saline updrafts 3-4 times a day to try to improve Wyatt's thick secretions. They also typed up a letter/order requesting a back-up ventilator which our DME company (Children's First) is very resistant to provide.

Physiatry was happy with Wyatt's progress and told us that they had high hopes for him and since he’s meeting all the milestones so far, follow-up PRN only.

Early Steps has put us in contact with "Beyond Therapy" to provide Speech Therapy with Occupational Therapy (for Wyatt’s feeding problems) once a week at our house. They will try to bill insurance first though, then Medicaid if the request gets denied by our private insurance, and then if Medicaid denies it also it will then be covered by either CMS or Early Steps.

Nephrology explained that sometimes babies in the NICU have what they refer to as transient high blood pressure, meaning blood pressure readings could be high due to the stress of being in the NICU or simply because the readings were done during or after other assessments which can give a false high reading. They at this point do not believe that Wyatt has true high blood pressure issues and put in the order to check his BP twice a day on the arm and at rest. If his systolic runs >115 consistently, then we will have to call them back and go from there. If that's the case though, Nephrology does not want Wyatt on Clonidine due to the drowsiness side effect and would switch medications then. Otherwise, follow up PRN only.

Regarding Nephrology, Children's First – our home nursing, DME and pharmacy company- is not being very cooperative. Since Nephrology put in the order to check Wyatt’s blood pressure twice a day, Children's First is trying to put it through our private insurance to supply us with their blood pressure equipment and they are asking for a monthly rental fee of $300 from our insurance. I explained to them that I do not want to go that route since we have the donated Critikon Dinamap Plus which has blood pressure capabilities and all I need is the tubing and the blood pressure cuff. Children's First is not willing to supply that to me since the Dinamap is patient-owned and was donated and therefore, they are unsure of the maintenance schedule etc. I assume it's a liability issue, as well as financial motivation on their part. Needless to say, we are not in agreement. I am now trying to see if my insurance will let us purchase the tubing and blood pressure cuff out right, which comes out to a one-time fee of only about $65 instead of the $300 monthly rental fee for Children’s First equipment. I definitely do not agree with our current DME company charging insurance $300 a month for blood pressure equipment we already have. I do not want Wyatt's lifetime maximum insurance benefit drained for unnecessary reasons. I also tried calling the Co-Owner at Children's First about the AC Power Adaptor for the Capnogrpah CO2Monitor which I am still waiting on. She just transferred me to person in charge in Equipment who then said, she has to get with the sales person from Smiths Medical (the manufacturer of the Capnograph CO2Monitor). Apparently, we haven't gotten any further with that issue yet either. I explained to that person in charge of equipment that it has been months since the order for the CO2Monitor has been put in and now that I finally have it, I still can't use it to continuously monitor my son’s CO2 levels per order of Pulmonology. She said she'll put "urgent" with her request. I'm getting the feeling that they are intentionally dragging their feet on this issue for the same financial reasons. I previously explained to them that once I can use the portable Capnograph continuously which also has Pulse Oximetry capabilities, plus using the Dinamap Plus as a "stay at home" Pulse Oximeter, I will no longer need Children's First Pulse Oximeter and we won’t have to unnecessarily charge my private insurance the monthly rental fee anymore. They were not too happy about that request back then either. Children’s First only wants to use their equipment despite the fact that we already have some patient owned equipment. Sounds like bad business tactics to me… As if that wasn’t enough, when I called the staffing manager at Children's First to get an update on the nursing schedule this week, she casually mentioned that Wyatt is on a weaning schedule and that we will be down to 8hours a day as of this Friday per Medicaid. She said the Co-Owner is trying to fight for at least 12-16hours but if we do go down to 8hours a day it will be hard to staff since most nurses only want to work 12 or 16hour shifts. Quite frankly, I almost lost it on the phone. We were told that we were originally approved for 24hours the first 30days, then 16hours the next 30 days, and the 8hours a day per Medicaid but that they would continuously fight to keep the hours as close to 24 as they could get. That second 30 day time frame should not be up until the first week of November. All along I've been asking for updates on that and all I was ever told was that the Co-Owner is working on it and they'll let me know if we drop from 24hours. Last week was the first I heard that we're going down to 8hours THIS Friday. And to top it off, we never even came close to receiving what we were approved for in the first place. We didn't even have a nurse this entire weekend. In the beginning we were told there would be occasional gaps in service yet we haven't had a night nurse in weeks and days have been covered 8-12 hours a day maximum. Considering all these problems, I don't think Children's First understands, it's not just a nursing issue anymore. Strictly from a business perspective, our son's diagnosis makes us long term customers and the way they run their business is not acceptable. If we switch companies, we are pulling everything, not just nursing but also DME and pharmacy! My husband and I are willing to look into different nursing companies at this point if we can take one particular nurse with us. I have already contacted another home nursing agency and the local direction is coming to meet Wyatt by the end of this week. Whether or not we can keep that one nurse as our primary nurse will ultimately be up to her. I’d love to keep her but it’s not my place to ask her to switch employers. I’m crossing my fingers that she’s willing to do so but even if not, we can’t stay with Children’s First considering the way things have been going. I shouldn’t have to call every day to see who’s coming in the next day and not get a response back from them if any until 10pm, and I shouldn’t receive phone calls from their staffing manager on my phone when she’s trying to speak with the nurse we have working that day. That’s so unprofessional. Children’s First is making me want to give up on nursing altogether and when they can push my buttons that much, it’s time to fire them. The same goes for the equipment issues with them. Even though switching DME companies would be hard since we'll have to switch all the equipment out, I'm sure there is a better company out there who is willing to work with us in terms of patient-owned equipment, yearly maintenance checks, a back-up ventilator, etc. I’m already also pulling Wyatt’s prescriptions and switching to a local pharmacy. Unless the other home nursing agency has some major red flags (that tops Children’s First issues), we’re ready to switch! It’s down to us calling the quits on nursing completely which we would regret some day or giving it another shot with a different agency. I'd like to be able to start my business back up some time soon, even if it's just part-time.

Fun, fun

Oh boy, what a weekend it’s been. Our two year old developed hand, foot and mouth disease. It’s highly contagious through contact and presents with fever, sore throat, loss of appetite and itching/pain sensation in the hands and feet, which eventually shows with little red dots that will become blisters. Those dots turning blisters will then also migrate and spread to the mouth and randomly across the body. I have no idea how he got this strange disease since he’s basically home with me all day but it could have been as simple as a grocery trip or the movies I guess since anyone can be a carrier of the virus. It only turns into the disease in kids under five years of age. That being said, that meant we had to basically quarantine our two year old. We sent him off to stay at Grandma’s house for the expected 5-7 day course while we went disinfecting crazy around the whole house for five hours to try to prevent Wyatt from getting infected. Not my idea of weekend fun but hey, that’s our luck lately. It seems like we manage to keep it contained though as Wyatt has not shown any symptoms yet and we’re now five days into it. Keeping our fingers crossed and keeping the two year old under quarantine until he’s all clear. (I really miss him though!!!) Aside from that drama, we’re working on making arrangements to go up to Children’s Memorial in Chicago in mid-February to see Dr. Debra Weese-Mayer who is specialized in CCHS. It will be a five day hospital stay for extensive evaluation and to develop a more detailed treatment plan which will allow us as the parents to make ventilator changes ourselves as needed, as well as give our Pulmonologist a better recipe for treatment. How to get up to Chicago is the biggest issue for us, especially in the cold of February. Driving would be ideal to have our big truck for all the equipment needs but it’s a minimum of a two day drive with an infant on a ventilator who doesn’t even like the car seat. And when I say he doesn’t like the car seat, I mean he absolutely hates it and will show off with plenty of Smurf moments. Flying on the other hand poses the risk of being around crowds and potentially getting Wyatt sick. Plus, there is the hassle of getting through the airport and taking all his gear as carry-on. Driving or flying, both are expensive. So I am attempting to find a way to either get a reduced rate on a commercial flight or to go through agencies like AngelFlight Southeast or OperationLiftoff to arrange for a potentially free flight on a smaller plane due to medical necessity. There are definitely some road blocks I’m running into trying to plan this trip in regard to the documentation needed for Special Needs, but after a day of banging my head against the wall (and catching up on some sleep), I’m back in the game and ready to attack. We’ll get it sorted out one way or another. We will need to arrange for transportation and accommodation though when we get to Chicago. I hope that won’t be an issue in the middle of February in Chicago weather. We’ll see, we still have time to plan… From a strictly medical standpoint, Wyatt is doing very well right now. We found a great Cardiologist who did his homework ahead of time and right away arranged for a 72hour Holter Monitoring, which Wyatt is hooked up to now. I am nervous about the result though since Wyatt is at such a high risk of having prolonged sinus pauses which could result in the need for a cardiac pacemaker some time in his future. This yearly test will probably always be nerve-wrecking for me. Pulmonology is on top of their game and ordered an abdominal ultrasound to check for Neuroblastoma which Wyatt is also at risk for and we’ll have to check for yearly. A Sleep study was already done also so we have a better understanding now what his breathing capacity or lack thereof is during each stage of sleep. Once we go to Chicago, they will repeat those tests among others and look at everything in more detail. Early Steps also called me today and they found an agency that can provide a Speech Therapist who’s also trained in Occupational Therapy to come out to our house. It’ll still take a while to get services started but hopefully soon they can come by once a week to help work on Wyatt’s feeding issues. I’m still waiting to get an AC power adapter for the Capnograph CO2Monitor so I can continuously monitor Wyatt while sleeping and we can then fine tune his ventilator settings to keep his CO2 between 35-45. Can you believe it, our insurance bought the Capnograph out right but the DME company failed to check that it only comes with one battery and a battery charger. That battery only lasts eight hours and then I would have to turn it off until the battery is fully charged again. So stupid. Of course I need either a second battery or an AC power adaptor to be able to continuously monitor. So I’m still waiting on that. Another fun thing I’m waiting on is Wyatt’s monthly delivery of a new trach. The one thing we really need is on back order, on manufacturer back order none the less. Fantastic. There is no way of knowing when it’ll get here. It’s bad enough we only get one new trach a month yet his trach is to be changed once a week, so we end up having to sterilize used trachs and reuse them. But this being the middle of October and the trach is on manufacturer back order, I’d be really surprised if we even get a new one this month. See, it’s so much fun dealing with home health care. There is never a dull moment. Speaking of home health care, I’ve come to the conclusion that Wyatt and I just don’t like home nursing care. Given my personality of wanting to do everything myself anyway, the nurses will probably never be able to live up to my expectations of multi-tasking. And Wyatt at 4 months old only wants to be held by either myself or my husband otherwise he’ll have back to back Smurf moments. I tested that theory today and sure enough, even when he got really fussy and over-tired, he didn’t have an episode when I was holding him. But when I handed him off to the nurse while he was content, he immediately switched his mood and had an episode every single time I walked out of the room. Way to make me feel guilty, Wyatt. Well, him needing to be held all the time led to me becoming really good at holding him in one arm while doing everything else with the other arm, like suctioning him, hooking up his feed, venting his G-tube, giving him his nebulizer treatment, etc. The bad thing about me being able to do it all one handed now though is that I have also lost my patience for the nurses, for example when they take forever to get things ready to get out the door for appointments or they spill my hard earned breast milk trying to pour it into the feeding bag or when they can’t even figure out how to secure the ventilator in the travel backpack. I really am trying my best to accept that nursing is just part of our life now but it’s just not working well for me. I am always so irritated when we have nurses and so much more relaxed when we don’t. Not trying to offend any other nurses here but in our situation where we as the parents are so involved in everything about Wyatt’s care, home nurses are just a glorified and very expensive medically trained babysitter. That’s just my opinion though and I am kind of annoyed by them today so maybe it’ll pass. And it really ticks me off when they kiss on him like he’s their baby or something. Ok, I’ll stop now. I just had to get that out. Oh well, that’s it for this week I think. Wyatt has a bunch of appointments this week, six to be exact, but most are just follow-ups and then his usual Pulmonologist and Pediatrician appointment. Hopefully November will be calmer.

Hate the G-Tube

October 11, 2011

Oh, the G-Tube. Can I say that I’m annoyed by it yet? We had a surgery follow-up 2 weeks ago and the nurse practitioner told me that they have to wait at least 12 weeks post-op to switch him from the 12FR G-Tube to a Button (the surgery was July 19). Well, I got a phone call now saying that the surgeon is not comfortable switching infants to a button and that we don’t need another follow up appointment with surgery. Well, isn’t that great since Wyatt loves pulling on his G-Tube. Now I have to wait till Wyatt’s next Pediatrician appointment to come up with a plan of action. The Pediatrician gives us the guidelines for adjusting his feeds so we didn’t really need a GI doctor so far and weight gain definitely has not been an issue for Wyatt since coming home.  Now, if we want Wyatt switched to the button though, we apparently do need to add a GI doctor to the endless list of Specialists. Wonderful. Did I mention that I’m not a fan of doctors or the G-Tube to begin with? The G-Tube is such a controversy for me. I know Wyatt bottle-fed and nursed before being intubated and I understand that he lost the sucking instinct and has to relearn it. But I also know from a strictly muscular and coordination standpoint that he can do it. In fact, he sucks on his fingers now all the time and has shown no issues with swallowing. But I feel like with the G-Tube we’re just teaching him how to take the easy way out. He’s smart enough to know even at 4 months old when it’s time for the next feed. I hate the strict 4 hour daytime feeding schedule and the continuous nighttime feeds. What normal baby actually gets hungry on a consistent 4 hour daytime schedule and requires continuous nighttime feeds for 8 hours straight without a break? Some babies feed every couple hours and then sleep half the night without needing any food, or vice versa. How is Wyatt ever supposed to learn to wake up when he’s hungry and therefore have the motivation to try to bottle feed if we just always hook up his G-Tube feed when the clock says so, regardless if he’s sleeping or playing or being fussy at that time? It seems like we’re just teaching him to be lazy when it comes to eating. This kind of set schedule was supposed to get him in a daily awake/nap cycle but instead it has done the complete opposite. He just sleeps all day long now until about 5pm, only waking up when he needs suctioning or a diaper change. From about 5pm till about 10pm he’s Mr. Cranky Pants with several episodes and then around 3am we’ll have a hard time calming him down again (with several episodes) to go back to sleep. That’s not normal baby behavior. By the time he shows interest in playing it’s supposed to be time for his next feed which again makes him cranky and sleepy. I’m ready to throw that schedule out the window. As long as he still gets the overall total amount in feeds, I don’t see why he shouldn’t be able to give us cues on when he wants to eat and play and sleep. I know we can’t go cold turkey and expect him to suddenly go straight to the bottle but come on, let’s try to be as normal as possible and let him set the schedule. There's got to be a better balance between attempting the bottle and gradually weaning him off the G-Tube on his time schedule.

Tough Decisions

October 8^th, 2011

Let me try to sum up the last couple weeks. I’ll try to stay positive but it’ll probably turn into venting sooner or later because I’m exhausted so bare with me…Wyatt and the rest of the family have been doing well and we’re getting in the swing of things. All the kids are definitely interacting more and Wyatt looks for the boys now when he hears them playing. He even gets upset when he can’t see them or they’re too far away and not getting him involved. So we’re trying our best to either let the bigger boys play in Wyatt’s room or bring Wyatt into the living room and kitchen with us whenever he’s in a happy mood. It still takes two people to move him to a different room with the vent and pulse oximeter attached to him but even the 6 and 9 year old are learning how to help me out with that. Wyatt is now also to the point where he scoots around the whole crib reaching for toys by now and is lifting himself up more onto his arms and knees during tummy time. That’s huge progress for him in only 4 weeks of being home. He’s made progress with the pacifier, too. He still only chews on it but he tolerates it for longer periods of time and even holds it and plays with it by himself. He still doesn’t like trach care but really, who in their right mind would. On another good note, I actually get to see my husband again for a few minutes a day now and not just for our nightly shift change. That’s progress, right?! Our two year old is the biggest trouble maker right now. He’s in the middle of potty training and has no accidents when someone is individually with him all day. But once I’m busy with Wyatt, the 2 year old will intentionally pee right on the floor just as an attention getter. I had never experienced the terrible twos with my two older boys but man, child number three is definitely making up for it. I wish I could afford a nanny! Balancing all 4 kids is what gets to me the most. I feel guilty for not being able to help the 6 and 9 year old with their homework and asking them to take on caring for the 2 year old. The lack of dependability with home nursing is not allowing me any room to breathe. We have one really good nurse once a week now who will be taking on Wyatt’s care 3 to 4 days a week in November and she’s the only reason I haven’t switched nursing companies yet. Making it through October without yelling at the staffing manager is the biggest challenge for me. I literally have to call every day to find out if/who’s coming the next day and often times we have open days and they fail to call me back with updates. Nights haven’t been covered for over 2 weeks now since we fired the night nurse who slept on the job. My husband and I have good routine but it’s still so exhausting. To be perfectly honest, while we are getting into somewhat of a routine and Wyatt is doing pretty well, I’m running on fumes by now. It’s really hard to be up half the night only sleeping on a fold out chair and then not being able to take a nap during the day because I’m either on the phone for hours with insurance, staffing, supplies, doctors, etc which is putting my phone bill through the roof for the second month in a row, or I don’t have a reliable nurse meaning I’m still doing all the work. Aside from a grocery trip and Wyatt’s doctor’s appointments, I haven’t really even seen the outside world. I was planning on taking a day to myself and going to the beach this Sunday but those plans had to be scratched since of course the weather is all gloomy and rainy all weekend. Overall, having Wyatt home is still a lot easier than when he was at the NICU and we had to drive each day but I’m starting to question whether the home nursing is worth the trouble. Even when I have a nurse, I can’t relax because having home nursing also means you have to keep updating a lot of different people on Wyatt’s medical status after each appointment when really it should only be between my husband and I. It’s such an invasion of privacy and a huge headache taking time away from doing what I really want to do which is spending quality time with my family. I’m really on the fence about it. We just have to make it until November to get that one awesome nurse several days a week. We may decide to only have her at that point and manage by ourselves the rest of the week. We haven’t decided yet though. Another thing we have to decide is whether or not to go up to Chicago to see the CCHS Specialist. At first I really wanted to take Wyatt up there as soon as possible and so we made the contact and filed all the paperwork with them. But now that Wyatt is tentatively scheduled for February 13-17, 2012 and I had a chance to speak in more detail with the staff up there to find out what tests and assessments will be done, I’m not so sure anymore whether taking him to the Specialist is of any benefit. We finally have a good Pulmonologist here in Florida who is on top of it all and has experience with CCHS. Most tests that are done during the 5 day stay in Chicago have already been done, some multiple times. The few tests we’re missing will be done within the next 1 ½ months. Yet the Specialist’s office routinely wants to repeat all those tests and what’s worse, they don’t let the parents stay with the child through some of those tests. I’m not ok with that. I want to be with Wyatt the whole time for his sake and mine. And I have seen him go through a bunch of tests already and I can’t find a good reason to put him through all those tests again. I’m not convinced at this point that we should go. I know they do all the research up there and they are good at teaching the parents how to work with the vent settings but that’s not a good enough reason for me. I’m sure I can get our current Pulmonologist to teach us whatever we feel we need to learn and exposing Wyatt to the long travel and then all these tests again at such a young age just for the greater good of research does not sit right with me. Even the simplest non-invasive assessments are really hard on him and throw him into more breath holding episodes for several days. I can’t watch him go through this anymore. I don’t know what to do. I just want him to be left alone and be a normal baby having normal experiences and not be traumatized anymore than necessary. He has enough doctor visits and tests ahead of him as it is. Having good doctors on board is important but when is it too much? When should we as the parents step up and say that’s enough. After all, doctors only look at a chart but we the parents know our children best and know when things need to be addressed and when things are better of left alone. Are we at that point?