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.
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