Sorry it has been a while. Things have been pretty hectic here. Daddy was traveling a bit and we had a quite a lot of different appointments and arrangements to make. Things are never easy or simple when you have kids now add a child who needs some extra TLC and things just got 5 times more complicated. I am not complaining by all means but there is always so much to do and so little time and nothing is ever simple. I swear, for once I just wish things would happen without having to spend hours on it.Where do I begin????
Let's see. Plumber had to come to fix leaking bathroom sink and outside faucet so we can water our plants during the deadly summer heat. Second time someone had to come fix that faucet...arghh. AC guy came to check on AC. We learned our lesson since last year we almost had to replace the whole unit because it wasn't draining and flooding our attic. Now he comes twice a year for a maintenance check. Local company. Super nice and professional. Exterminator came to protect us against all those evil four legged critters trying to seek refuge from the summer heat in our humble home. Since daddy says "he doesn't do bugs" and says "I'll take Jagger to protect him" means I, mommy, have to deal with them. According to Sebastien, my years of travel to Africa have made me an expert on insect control or rather extermination..not sure this is a word:). So while he screams like a child, I get to deal with the giant roaches. Just for the record, I hate them as much as he does!!! So the exterminator was much welcomed. Then our nurse came a few times to check on Jagger and access his port..which takes time and is another ordeal. But he was an angel and our nurse knows what she is doing. We also had several doctors appointments. One with a new mito specialist, Dr. K, (I know all our doctor's names start with K). and we discussed the possibility of getting into a drug trial. More to that later.
Then we had to see Jagger's GI doc to discuss replacement of the PEG tube as the end piece stretches out over time and then leaks stomach content, mainly medicine and his food all over. We routinely have to change him, sheets, us etc. Turns out the 12fr tube they put in although collapsible cannot be taken out externally through the stoma. It can only be removed surgically. Which means he would have to be sedated and intubated. NO WAY as there is a 50/50 chance he will not be able to come off the ventilator after surgery. We will deal with the leaking longer although I think we have been attaching the feeding extension to the wrong opening (we were just doing what they showed us at the hospital) which stretches it and prevents the cap from closing tightly. It is pretty easy to replace but at $25 a piece, it is starting to get a bit costly if we have to replace it several times a week. We reached out to the manufacturer and they said to send the broken pieces for inspection and replacement. Maybe this way we'll be able to get some free replacements. Also, if we had put in a 16fr we would have been able to take it out without surgery but apparently it hurts like hell. So not sure this would really be an option either. Again, for once we wish things were simple. But no!
We also met with a traveling pediatrician. As we prefer not to take Jagger anywhere (or rather he prefers it) we were looking for a pediatrician who does house calls. Looks like there is one here but of course this type of service is not covered by insurance. Again, having to weigh additional financial burden with convenience.
Then my car broke down so I had to take it to a garage to get a new battery installed. Jagger's wheelchair/stroller was broken again so the supplier sent a repairman to adjust/fix it. This time I had tried to adjust the head rest which was too low and then would no longer stay in place despite my best efforts to fix it myself. Again, time spent setting up the appointment and waiting for the guy. I also called the manufacturer to request they send me proper tools to adjust the chair. Well in order for them to do that they needed a serial number for the chair. Easy, right. Not so fast. The serial number is beneath the chair cushion under a support plate. arghh. So I spent another 15 minutes trying to yank out the cushion, finally found the number but was not able to put the cushion back without taking the chair apart again which had just been adjusted to fit Jagger. Another 45 minutes later, I finally had the chair back together. I am not sure what it is with this chair but I am really OCD about it. It is all crooked and it bothers me because Jagger then sits in it crooked. The guy who adjusted the chair the first time told me not to worry about aesthetics but rather focus on Jagger and how he is comfortable. Well the problem is that Jagger does not have trunk control so he cannot sit up straight and slouches to one side. I need this chair to support him and NOT to adjust to his crooked body. It is not that Jagger wants to sit that way but rather he does not have the strength to sit or support his body otherwise. Arrghh.
Daddy also traveled a bit which was torture for everyone. Jagger was screaming and kicking for 5 hours until 2 am. Likely a combination of no daddy and teething. I had to give routine valium, morphine and oxygen after which he finally settled at 2 am. Daddy is gone again till Sunday. Let's see what happens tonight and tomorrow. I already fear the worst.
I also tried to get an eye appointment for Jagger as there are several eye conditions associated with Leighs syndrome, Next available is early June. Are you kidding me??? In addition to that we have to deal with insurance, hunting down his reflux medicine which costs an arm and a leg and is impossible to find (he only tolerates one specific kind prior attempts of switching to compounded or generic have failed miserably), dealing with our other mito specialists who does not return phone calls or emails but keeps sending us bills for visits we never had.
Another challenge is to find clothes for Jagger as he gets older and bigger. We found a solution for his pjs but during the day I prefer to dress him in onesies to cover his tube but the largest size most clothing stores carry is 24 months. With t-shirts his stomach is open and the tube keeps coming out resulting in Jagger grabbing it and potentially pulling it out. Sebastien and I also have two full time jobs and a house to take care of and the regular household shores..cooking, cleaning, laundry, shopping...
Thank goodness for the internet though. We do find a lot of stuff for him that way.
I keep asking myself what we did with our time prior to this?? Maybe we became more efficient??
Anyway, Jagger is doing ok. He continues to be the love of my life and my absolute favorite person even when daddy gets smiles and I get frowns:). I continue to give him 1001 kisses every day (1000 for today and 1 extra for tomorrow in case I can't give him any more kisses).
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Jagger was trying on daddy's glasses. He was very happy daddy was sharing with him:).
He really does want to be like daddy. His hero. |
