You know, I’m a bit tired lately… emotionally and physically. So, I thought I’d write a post that gave you a peak inside at all the hard stuff that’s going on in and around my life so that you would all know that it’s not all blogging and roses! It’s been tough. And, I am human. I fall down. And sometimes, I reach my breaking point… Though I don’t think I’ve ever actually broken — not to my knowledge… not yet anyway — I do believe there are a few more cracks after this week. Yes, I’ve been moved to the brink tears. And, I am genuinely and completely overwhelmed with no relief in sight (though I know it’s somewhere out there in the future).
As they say, IT happens.
So, here’s a bulleted list of some of the issues on my plate just for this past week:
- Sarge got word over the weekend to report to a brand new command this morning. His long-awaited transfer out of Fort Apache – The Bronx was finally approved. But, with all the stuff going on this week, now’s not necessarily a good time for more change in any part of our typical routine. Not that we have a choice! Besides this is really good news.
- The boys were finally well enough to pass their pre-op appointment with the pediatrician. Their congestion is minor enough at this point to go forward. We are cleared for surgery.
- I never received the pre-op phone call so I had no idea when, where or if the surgery was actually going to happen on Tuesday — as scheduled for weeks now, nor how to prepare for it. Spent the day hunting down the people who are supposed to be in the know at the surgical center, surgeon’s office and pre-registration group only to be told by each that it was the other guys’ responsibility and to wait to get the call. Which never came. At 9pm the night before the surgery I call the surgeon’s emergency on-call number and finally receive a call-back with vague pre-op instructions (the all important “don’t eat or drink for 6 hours before surgery” instructions… But I don’t know what time the surgery is so it’s hard to implement with any accuracy). The on-call surgeon tells me to call the surgical center in the AM to find out the time. You’d think he’d get someone to do this for us, wouldn’t you? Too worried to sleep.
- After calling and finding out at 6:30am that the boys’ surgeries are scheduled for “11:30 and 12:30… no no 10:30 and 11:30… no no just be here at 9:30 and DON’T GIVE THEM ANYTHING TO EAT OR DRINK FOR 6 HOURS BEFORE SURGERY” (Hmmm, fortunately I didn’t… but these instructions would have been at least 3 hours too late if I had.) Sarge and I spent the day fasting with the boys… no opportunity to do otherwise and then we didn’t think it fair to eat and/or drink when they couldn’t… especially in front of them as we completed their pre-operative rigmarole — repetitive questions and uninformed anaesthesiologist spouting how he knows “Downs kids”. We got through the surgery and, with a brief pain-med delay, were allowed to leave at 3:00pm. Home by 3:30pm. (BTW – the surgical center claims they “left a message with the times but must have had the wrong phone number!” No explanation of why nobody gave me the necessary info when I called them 3 times over the course of the preceding day though.)
- Both Sarge and I noticed odd marks, a rash developing, on Michael’s legs immediately after the surgery. I thought maybe it was some sort of scratches because I neglected to clip his nails AGAIN so I didn’t mention it. Not sure why Sarge didn’t mention it.
- After numerous unsuccessful attempts at reaching my Co-leader to attend in my stead, I gave up and just skipped the monthly Girl Scout [Brownie] Leader meeting in favor of staying home with my post-surgical boys this evening. Our troop goes unrepresented. Oh well!
- PM — The boys’ pain is significant. Tylenol with Codeine is in order. They sleep soundly…. drug-induced sleep. I was mostly up watching and ensuring that they were ok. Maybe I should have taken a swig of that stuff too. (Just kidding)
- Ongoing care of my post-surgical boys, dosing regular pain-meds to address their discomfort. Emergency prep work for the Old Soul’s Brownie meeting this afternoon. Too late to cancel. Still can’t reach the co-leader.
- The potential but aint-gonna-happen contractor visited us. His estimate for putting on a front porch came in at an impossibly outrageous and entirely untouchable price. That means we can’t refinance to lower our bills while the interest rates are low… Without a reasonable estimate, contractor and work date, if I want to refinance, I have to pay to take the porch off the building plans and refile them with the building department in order to close the permit — a long, costly and drawn out process and a lose-lose situation. My only other option is to get a more reasonable estimate and see if I can get the work done quickly with another contractor. Time and footwork. All me.
- I whipped up a neat Rock Candy Crystals science experiment that counts toward earning a Science Wonder Brownie Try-It badge and, as a reward, I got an hour and 15 minutes reprieve… in the company of 10 girls, a helpful parent and my co-leader, who I finally reached. The Old Soul and her Brownie sisters had fun and were happy! I can’t wait to get back home to see how the boys are doing.
- Meanwhile, across town, one of my older sisters took my even older Dad to the MD for follow-up on some neurological tests he’s undergone in the past 3 weeks… all meant to eliminate physical reasons for his recent memory loss.
- My father’s rapidly failing memory continues to puzzle us all. In the past year we’ve seen a significant decline. As previously mentioned, in the past 3 weeks I’ve taken him to about 6 MD appointments for various tests, and my sister’s taken him to a couple as well. And though the neurologist didn’t find anything “wrong”, we got the news from his general physician (I’m the contact on record because he is my GP also… easier than managing 2 separate doctors) saying that Dad’s got early signs of emphysema, hyperthyroidism and prostate cancer. More tests and doctor’s visits are in order.
- Brian’s bandages fell off (as expected) but we had to cut Michael’s off… no easy task as Dad held him down so I could cut and peel the bandages off while Brian wailed, holding his crotch thinking we’re going to castrate his brother or some such thing. Without the bandages, their genitals look like raw chopped meat, bloody and exposed. The boys are far more uncomfortable now even with the loose diaper barrier and padding. Back to round-the-clock pain-meds… which causes constipation again which they’d just begun to overcome.
- PM — I noticed Michael’s rash has continued to spread and the red spots are more pronounced now. When he began vomiting, I call the Pediatrician. After a couple of failed attempts at accurately describing the “rash” and at giving Michael Benedryl (he kept throwing it up), the Pediatrician recommended the Emergency Room… just to be safe. We did not want to go at that late hour… so I called the emergency on-call number for the Peds Urology surgeon (not our surgeon but one of his colleagues) for a 2nd opinion. I start all over. He didn’t think it sounded “life-threatening”, vehemently denied it could have anything to do with the anaesthesia, and recommended an over-night Pediatric group 45 minutes away versus the Children’s ER at Schneiders Hospital (also 45 minutes away) OR wait until morning and see our Pediatrician which he thinks is still a safe choice. We choose the latter. The Old Soul tells me that she didn’t want to bother me in the midst of all the vomiting commotion but her throat is sore AGAIN! As it has been numerous times over the past 2 weeks. Tylenol all around and restless sleep for me and my boys again…. I’m worried.
- No more vomiting but Michael’s rash continued to spread and worsen. I called the surgical center and spoke at length with the anaesthesiologist on duty (not ours) to collect all the information I can regarding the meds Michael was given. I’m still thinking it’s an allergic reaction. I called the Pediatrician and ask him to squeeze Michael AND the old soul in (to address his rash and her waxing and waning sore throat). We’re on for 3:00pm which means I’m pulling her from school early and fore going the boys’ first permitted bath in 4 days. It’ll wait.
- The Old Soul’s school calls. Dad — who’s best described at this point as marginally confused about familial relationships, chronology and time — shows up at my daughter’s school to pick her up at 12:30pm instead of the usual pick-up time of 3:oopm. (Note: This is his 3rd year — and, sadly, probably his last — of picking her up from school. This year I have had to be there every day as his back up given his memory issues… but the perceived responsibility gives him something to do daily.) The school administrators finally figure out who he is, why he’s there and the principal walks him home after the old soul calmly explains his memory problems to everyone… “tell him to come back later”. They just want me to know. This after 6 weeks of drilling him on which door and what time he needs to show up to pick her up from school… truly the last of his responsibilities… and he and the old soul both LOVE this time they get to spend together. I’m bummed. I thought he’d just caught on to the right pick-up door but now he has apparently lost the pick-up time. The principal calls me later to check in, expresses his concern, commends my Old Soul on her mature and calm demeanor in this confusing situation and says he’ll instruct the school staff to handle further incidences as I recommend. He says he understands.
- Michael’s post-op rash is diagnosed as idiopathic thrombocytopenic purpura — vein-level red spots all over his body. A big scare for us and for the Pediatrician as this condition is usually indicative of an immune system problem that results in the body’s attacking it’s own platelets and is often related to leukemia in children with Down syndrome (who have a higher risk than normal). Blood work reveals his platelets are fine — at healthy levels — so at this point we believe, hope and pray it was caused by a viral infection. But, we’re on a high-alert rash-watch to ensure that nothing more develops. If the spots worsen and/or continue to spread, we’ve been instructed to call the Pedi immediately. Scary stuff. My worst fears are dangling in front of my very eyes. Olivia is recorded as running a slight fever at the Pedi but her strep test came back negative. Once home, the fever increased rapidly. She’s sick but at least it’s not strep! Just get in line for some Tylenol.
- PM — The boys’ post-op genitals still look raw and they are still uncomfortable so I continue with the Tylenol which is still causing constipation discomfort. That’s the lesser of the evils. They are moaning and groaning and rolling all over the bed all night long because of gas, constipation and pain/discomfort. Brian rolls over and kicks Michael in the groin; Michael screeches “Ow”; Olivia wakes up crying because her broeys woke her. She’s hot again. More Tylenol all around. It’s 2:30am and she can’t fall back to sleep which she proves to me by continuously waking me up from my half-awake/half asleep drifting state to tell me she’s still wide awake. “Close your eyes, Olivia!” Truly, I am exhausted. I have that tired, floating brain feeling.
- Initially, things seemed to have settled down after another sleepless night for all. Upon morning diaper changes, I discover that Michael’s wound has run afoul. Swollen and purplish-red it looks like he’s about to pop the now visible, previously inconspicuous, stitches. I’ve called the Pediatrician and waited for a call back with instructions on how to proceed. Mikey’s sits immobile on the couch, his eyes are red-rimmed. And, though Brian is actively running about, seemingly unscathed and visibly healing, Michael is quiet and reserved after being carried downstairs. He hasn’t moved. My poor little guy is beaten up… again. The Pedi thinks that Michael’s had a minor internal bleed in his wound… hence the dark red/purple color and swelling. Maybe he bumped it. (Maybe it was Brian’s heel to the groin in the middle of the night?) “Ice it and watch it. If he pops the stitches, he’ll have to see the surgeon immediately.” But, it’s the weekend so I know they’d just send me to Schneiders Children’s Hospital ER. I don’t want to go there but Michael also won’t have ANYTHING to do with an ice pack on his sore and swollen genitals. After a little while, it looks as though the swelling went down a bit so I give them their 5 minute baths… separately or I’ll never get them out after 5 minutes. The Pedi says to “keep up the prescribed after-care!. But his genitals nor his demeanor look any better after the bath. He’s shaking and back to lounging on the couch… tears running slowly down his cheeks. More Tylenol. Guess I’ll ask Sarge what he thinks the next move is when he gets home… in about an hour. Oh no! Wait, he’s working the Yankee play-0ff game again tonight. He won’t be home. I’ll have to figure it out by myself… again.
So what’s in our not-too-distant future? Quick resolution of Michael’s wound condition, hopefully. And, though I was promised by the surgeon that the boys would be able to return to school this Monday after clearing their post-op check-up. I’m told the soonest available post-op check-up appointment is October 26th… 2 weeks away. I MADE them schedule us sooner… on the 21st. (Hopefully, they’ll pass!) Still this will have them out of school more than 2 weeks total… twice as long as it should have been… and that’s only if they’re cleared. I also need to follow up with their school’s gym teacher, Physical Therapist, Occupational Therapist and Teachers to discuss what activities they’re allowed to participate in and which they are restricted from and how to manage that process/restriction without devastating the boys. I have 3 follow up appointments scheduled for Dad to ascertain the severity of his illnesses. I have the boys’ Back-to-School night… which I think we’re going to miss, unfortunately. Not to mention the Parent Association Book Fair for which I have volunteered time the day before and that same night at their school. Did I mention I’m the Co-Vice-President of that organization? Sorry, but we’re just out of commission for now. The Long Island Buddy Walk for Down Syndrome is Sunday… not sure our team is going to make it. And, finally, the old soul’s birthday party needs to be planned and undertaken. Her birthday is next Saturday! That might need to be postponed too!
I’ve had the boys out of school battling colds the entire week preceding surgery to get them healthy enough to undergo the surgery… Plus they were out all last week… And, I’ll have them out almost another week yet. I’ve barely cleaned or food shopped in 2 weeks! No opportunity to go… Can’t take them out. Can’t leave them home. All I’ve done is attend to pseudo-sick kids and my pseudo-sick self… This nagging cough and fleeting sore throat is getting the better of me and my Robitussin, I fear. Even my Mom, who is often my ace-in-the-hole, has come down sick with a bad cold this week! It seems the powers that be have conspired against us in some ways… though not in all. I guess I’m on my own!
Where the silver lining in all of this? Sarge got his transfer. The boys surgery is behind us, healing and potty-training still ahead. The Old Soul doesn’t have strep. And, I’m still standing! With a smile (if not a tear in my eye).
Actively pursuing happiness and focusing on the good stuff is the only way I get through times like these. You can see why — after a week like this — it’s a conscious choice that I make every second of every day… especially lately. Like Dorie in Finding Nemo I repeat over and over again to myself — and sometimes out loud, “Just keep swimming. Just keep swimming. Just keep swimming, swimming, swimming!” Chin up (above the water line). Fins to the left… flapping and flailing at times. Sucking a bit of water here and there… But we are all still afloat! Mostly happily! And weeks like this too shall pass!