October 8th, 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?
Thank you for your continued posts. It's really helping us get an idea of what living CCHS lifestyle is like. I mean I know everyones situation is a little different but still, it helps.
ReplyDeleteWe're still waiting on the CCHS test to come in. We were supposed to get the results more than a week ago but the lab was "backed up". 4 days ago baby Keira got her trach in. She's healing well and taking a bottle now. My wife has been with her most of the time but the very next day I started getting a cold along with our 3 year old so that killed any chance of going to see her. That's been really tough. The good news is her "ups and downs" as we call them (her deSats) haven't been as low or as frequent as they once were with the nasal cpap. Before when she would go in to a deep sleep they'd drop sometimes in to the 40s and she'd need stimulation or more O2 or more pressure from the machine. Now it only dips in to the 80s with the occasional lower dip bc of built up mucus or something in the trach. Man, its just so unreal even writing this right now. I still don't think this has all even set in. On another positive note we're going to get connected to another couple from the Kaiser NICU who also just recently had a child diagnosed with CCHS. I don't recall if I mentioned but the same NICU had 2 CCHS kids in at the same time about 5 months before we had Keira! Before that they had never had a case of CCHS. So odd.
So our NICU doctors have clinically diagnosed her with CCHS in order to get all the paper work started. We have decent coverage but not all of our equipment is covered and we'll need to get medi-CAL or whatever for the nursing help. I'm just hoping that since we're in the bay area they'll be a lot more selection and we can get the best care possible. That's my hope anyways, esp after reading your home nursing experiences. Anyways, our positive vibes go out to you and your family. Here's to it only getting better.
-The Gregory Family
Travis. Thank you for continuously reading my blog. It's a place for me to vent and share updates about Wyatt but I was also hoping that our journey can somehow help other families... We (my husband and I) think that CCHS is probably under diagnosed considering how relatively new the genetic testing is. We're actually curious to find out through further research if there may be a link between CCHS and SIDS. But that's just our minds wondering and trying to figure this whole thing out. Overall, as I mentioned before, it could be worse. This condition, as susceptible as CCHS kids are to illness and infection, it's still manageable. You'll learn how to do trach care, trach changes, suctioning and o2/co2 monitoring. Just make sure to fight for all the equipment you need. It’s a battle but use the Statement from the American Thoracic Society on CCHS as your reference to show the medical necessity for optimal clinical management and treatment. Don’t take no for an answer. Just go up the ladder if you have to. Home nursing is the same issue. You just have to be very straight forward on your expectations for the nurses and boundaries in your home. No matter how much experience they have, you have to train them on the specifics of your child and especially on the dos and don’ts of CCHS. It’s an employer-employee relationship. You want them to be comfortable and happy but they still have to earn your trust and respect your wishes. We had to put note cards on the crib with little reminders such as to do trach care, trach tie changes or trach changes with 2 people, or to never silence the alarm because of the unpredictability of the breath holding/cyanotic episodes. And ultimately, you have to find nurses that are a good fit for your family from a personality standpoint. Home nursing is a very personal choice and you have to be comfortable. Have you and your wife started doing hands on care in the hospital already? The more practice, the easier it is once you get discharged. And to be honest, trach tie changes still make me nervous because Wyatt always has an episode in the middle of it. But you’ll learn the little tricks on what works better for your daughter just like you did with your other child. You're already ahead of the game if she can bottle feed. Our son unfortunately lost that initial sucking instinct because of his long intubation and now is only g-tube fed while trying to relearn the sucking motion. That’s more frustrating to me by now than him being on a ventilator… You’ll manage, I promise. Just try to rule out any other risk factors associated with CCHS (if confirmed) while you’re still in the NICU. 48-72hour Holter Monitoring, Sleep Study, EEG, ECG, MRI of head and abdomen are the main ones to check yearly and since your doctors have had cases with CCHS before, you should be able to get these tests done before being discharged – that’d be a lot easier on you than trying to run back and forth to appointments afterward. They may try to tell you that there are no signs of any issues but those tests will need to be done anyway and if nothing else they serve as a baseline for yearly check-ups… If you have questions, just let me know. Keep in touch and best of luck!
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