nerve-wrecking

Unpredictability, I have always hated it but now even more so. Since coming home September 8^th, 2011, Wyatt has had three colds and managed them very well without needing more than Tylenol and additional snuggle and sleep time. Even with teething he’s been doing pretty well. He has the Smurf’s marching in more often when he’s in a lot of discomfort but again, Tylenol is our best friend for that also. So we were starting to think that it was safe to assume Wyatt has a pretty strong immune system because he’s been stable for 4 months now. Damn it. How dare we assume anything? Just when you think you’re in the clear and you have a good handle on things, CCHS has a way of throwing you an unexpected curve ball. Wednesday night we were woken up a couple times by Wyatt’s pulse ox alarm. That’s nothing too unusual since it can get a bad signal if he’s moving or it may be an indication that the pulse ox probe needs to be changed. So as long as it comes right back up, it’s no big deal. Then on Thursday, he woke up from his nap only to fall back to sleep in his bouncy chair which he has never done before and the desats started again. So we checked his CO2 because if he trends higher than usual it can be an early indication that he might be coming down with something. His CO2 was around 25 while awake which is a little low but it’s his normal on the current ventilator settings. He also wasn’t showing an increase in his body temperature. So we thought maybe he’s just really tired, he is still teething after all. To be on the safe side, as usual we went through the protocol of attempting to stop the desats by checking the waveform on the pulse ox machine, checking the pulse ox probe, changing the probe’s position, suctioning and then changing the trach. By the time he was taking his afternoon nap however, his SATS randomly started bouncing up and down again between 90-98. It wouldn’t last long and they’d come back up but usually he stays stable at 98-99 awake and asleep, plus he was sound asleep and not moving. It didn’t make any sense and it put us on high alert – more so than usual. Thursday night, we again had the occasional desatting but only briefly so even though it was all really weird there was no indication to intervene. Giving Wyatt O2 unnecessarily can raise his CO2 levels so we didn’t want to jump the gun. But then came Friday at which point it was happening both while he was sleeping and awake and the time frame of the desats was increasing. Now he was bouncing only between 89-94 and his lip color was changing. Fantastic. Way to get my adrenalin going. This is nerve-wrecking. Taking him to the hospital wasn’t really an option. There were no other symptoms at the time so aside from giving him O2 and keeping a close eye on him, there was nothing else anyone could do. So I started with 0.25L of O2 but quickly had to increase to 0.5L O2 which seemed to stabilize his SATS at 98. His CO2 trend was now up about 10points and by that afternoon, his sleeping heart rate was higher than usual up in the 140s-150s, his chest sounded coarse and he kept coughing but no secretions could be suctioned out. The Pulmonologist put him on Prednisolone twice a day for 5 days to reduce the possible inflammation in his airway. What exactly caused the inflammation, no one really knows.

Today he seems to be doing a bit better. He’s not coughing as much, his CO2 is back in his usual range but he’s still really sleepy and only wants to be held. He’s napping right now and staying between 96-98 without O2. I’m keeping my fingers crossed that we’ve passed the worst of it. So here’s to the unpredictability of CCHS which forces us to always stay on high alert. Cheers!

new year, new outlook

Wow, we made it to 2012. I have to admit there were times last year that I wasn’t sure whether we’d make it this far. And I’m not just referring to Wyatt’s close calls in his early days of life.  I’m more so talking about our family as a whole. We’ve been under quite a bit of stress and uncertainties within the last 7 months and I am proud to say that we have found our way! We don’t have all the answers and the road ahead will be filled with trial and error I’m sure, but somehow in the midst of everything we have managed to stay on the balance beam. Maybe it was because of all the ups and downs, the happy , worried and angry tears, the miscommunications, occasional meltdowns and genuine hugs, the questions, the reassurance and (mostly) arguments with the medical community that make us stand tall now and say, “We’re doing it our way”.  Whatever it was, I’m proud of our family for pulling through and becoming closer to one another and stronger because of it.

those eyes say it all

first time to the beach and he slept right through it - Dec 25, 2011

first time to SeaWorld - Dec 29, 2011

working on his core strength

We have finally reached a point where things are settling down again. I am happy to say our life doesn’t only evolve around Wyatt anymore. Taken out of context, that would sound really wrong but based on our history over the last 7 months, that’s a good thing. Yes, he’s still the center of attention but no more than any other 7 month old would be. We’ve gotten used to taking a bunch of equipment with us anywhere we go. In fact, we make it a point now to go places as a whole family whenever possible. Just a few weeks ago, the older three boys went camping with Grandma and Grandpa for almost a whole week and my husband and I decided to drive up for a day with Wyatt to join in the fun. Was it easy? No, that’d be a lie. But it’s getting easier. And just last week Grandma, my husband and I took all four boys – Wyatt included – to SeaWorld.  It was a bit of a struggle at first and tensions were running high but by the end of the day, we got the hang of it and accepted things for what they are. We can’t change how other people look at, perceive or respond to Wyatt. All we can do is to teach him how to take care of himself given his diagnosis and to not ever let that stand in his way from accomplishing what he sets his mind to. Overall I’d say the biggest lesson Wyatt has taught me over the last few months is to let go of everything always having to work out perfectly and to learn to just roll with the punches. It’s all work in progress but that’s what life is. Life doesn’t stand still waiting for one person to catch up. You either jump right in it with both feet or you’re missing out.

On a practical side, we officially gave up nursing altogether. We tried out one week by ourselves which included moving Wyatt and most of his gear upstairs into our bedroom each night – we have a co-sleeper - and then back downstairs in the morning. And guess what? He slept like a “normal” 7 month old would. Most nights he sleeps a good 6 hours straight, wakes up for about 15 minutes to get his diaper changed and fed, and then he goes right back to sleep till about 7am. It was amazing what a difference it made on all of us. So then one week led to a second trial week. Ok, honestly, the second week wasn’t a trial week. I was just too chicken at that point to tell staffing that we wanted to quit nursing. I felt guilty. We had just switched agencies in November to give nursing another honest try. And they worked really hard to get us more nursing hours approved (even though we never asked for an increase in hours) and overall have been great to get us continuous coverage. BUT it simply comes down to the fact that we are not comfortable no matter how good the nurse is. Wyatt is our son and we want to be the ones taking care of him. Having night nurses caused more anxiety and interrupted sleep than not having any. And when he does wake up in the middle of the night, it’s our job as the parents to comfort him and hold him. I don’t want anyone else taking that experience away from us. Does it get crazy in our house sometimes with sleepless nights and never-ending days? Of course! We have four boys so there are a total of six people living in this house. I’d have to seek counseling if it didn’t get crazy and overwhelming from time to time. But you know what, that’s the way it’s supposed to be. We don’t need a nurse to come and take over Wyatt’s care. During the few emergency situations that did arise with Wyatt already, the nurses weren’t even sure of what to do and I had to handle those situations. As weird as this sound though, I don’t even blame them for not knowing what to do.  It’s a complex and rare genetic disorder that throws all logic or predictability out of the window. In the end, no nurse will ever know Wyatt as well as my husband and I do. The other thing that always bothered us with nursing, and this is a very personal decision and I don’t blame any family for choosing otherwise, it always felt like a restraint rather than a relief to our family. Simply knowing that we have nurses coming every day, even if it was only at night, it always made us feel like our freedom was taken away from us. The only way I can explain it is that it felt like it was weighing us down and holding us back from treating Wyatt the way we want him to be treated as a person, not as a medical case. Therefore, we have decided that home nursing is not right for our family. We did however decide that we are going to apply for a service dog for Wyatt. Wyatt has to be three year old before a dog can be placed with him but the waiting lists and training periods are long and we made this decision based on long-term goals of easier socialization and independence for Wyatt when he gets closer to school age. The dog will be trained to respond to various medical equipment alarms, to seek help with breathing or cardiac emergencies, as well as assist with mobility and balance if needed.  The only other medical news I can speak of right now are the upcoming trip to Children’s Memorial Hospital in Chicago to see the team of Dr. Debra Weese-Mayer at the Center for Autonomic Medicine in Pediatrics, and our lack of progress with Occupational Therapy. We have decided that we will take Wyatt for evaluation and treatment by the top specialist for CCHS and see where it goes from there. It’ll be rough on all of us but this trip should provide us with a better understanding of what Wyatt’s breathing capabilities are during various activities, and therefore, what a realistic approach to optimal treatment will be. Occupational therapy on the other hand has been less than successful. So far we’ve been trying to work on Wyatt’s sucking abilities in the hope of getting him to eventually drink from a bottle. Due to the fact that he’s been teething for the last month or so, has four teeth now and still seems to be having more teething discomfort, his instinct of chewing on things is simply too strong to improve his sucking abilities. Therefore, we will now try to shift gears and attempt the use of a harder zippy cup and also work on improving his chewing and swallowing abilities. He is showing a lot of interest in food and chews down on it but the problem arises once the food is in his mouth. At that point, he moves it around with his tongue but doesn’t know what to further do with it which then tends to lead to gagging. So, we’ll see what the next few OT sessions bring. I know he’ll figure out how to eat eventually but it’s frustrating that it’s taking so long. Aside from the oral motor issues though, he’s still hitting all the milestones. We are pushing him a little harder with attempts of sitting up on his own. He’s doing better with it but still needs the support to not tip over. Other than that, he’s still just smiling, crying with the Smurfs, eating, pooping, and sleeping away and kind of funny looking with his four teeth now.