A look into a special needs mom's everyday life of raising 3 kids- when one of them won't (can't) leave the house. - This blog was started 15 years ago. It is a window into our world and our journey to supporting our son. Who now has the capacity to not only leave our house (on his terms) but to engage in many other activities of life with joy! This is a story about hope!
Wednesday, February 19, 2014
3 words to sum up the last 5 weeks.......... WE DID IT! (oh and hospital, kidney, bonding) read on
Hello.... yes a bit of a holiday from my blog.. Every time I sat down to write something, I found myself overwhelmed, emotional, and honestly just too much going on in my head from this whirl wind of the past 5 weeks. A quick summary: Christmas holiday, New Years holiday, Jan 4th Ty begins experiencing major symptoms of bowel blockage (which requires hospital clean out- after all, it had been 8mo!!)January 5th - preparing for Brian's big surgery day. January 6th, Brian leaves at 5:00am for the hospital (I wasn't able to bring him, we felt that early morning was too much disruption for the kids and their routine- so his other sister picked him up and brought him)It is also first day back at school for the girls after Winter break.Brian so bravely is in surgery, donating a super awesome kidney to his older sister..... Megan goes off to school, I kept Sarah home for ease of all that is going on So Ty, Sarah and I try to occupy our minds, think positive thoughts that all is going well for Brian!It was hard not being there with him- okay, I"m getting distracted and emotional again... I'm going to try and keep this less emotional and more systematic.... otherwise I don't think I will get through this :) Brian's sister (the one not receiving the kidney) calls me regular updating me..... it was a 5 hour surgery.... that was a long 5 hours!Meanwhile, Ty has continued to have major symptoms- vomiting when he eats food, and if he drank more than 2 oz.... yep, vomiting again..... so he wasn't feeling well at all..... this now had been going on for 4 days- but in my mind, I know what he needs and we just need to get through this one day.... know that Brian is healthy and doing well and then I can deal with what we know to be necessary for Ty- hospital clean out.... Later Monday I get to visit my husband as he's waking up from surgery...... to say that was emotional is an understatement. But I"m so glad I was there with him- just holding his hand.Tuesday arrives, Ty continues to be pretty sick - and I am instructed to take him to the ER. Not an easy feat by any means- needless to say, once we arrive, they are not able to do the clean out until Thursday- so I decide to wait it out at home- he's stable enough and would be much more comfortable to be home.Thursday comes with anxiety and anticipation- but the pre meds for Ty work! I am able to get him to the hospital for his clean out- and boy do I love love love the peds surgery center! They took great care of him as usual. So, while Ty went into surgery for his clean out, I went down the hall and up the elevator to the 8th floor where my husband was lying in a hospital bed, recovering from donating a kidney. Yeah, again pretty emotional for me.... I am doing this all by myself and everyone needs me to be strong- so I am when they see me. It's the in between that I fall apart- I swear there wasn't enough distance between Brian's hospital room and peds surgery center to feel relief .... so I did at one point just sit in the hospital lobby, by myself, my face buried in my hands. I just couldn't take one more minute- I had to relieve some of this so that I can then put my game face back on and be there for Brian and for Ty. So they were discharging Brian this same day, and I was trying my hardest to listen to what the discharge instructions were, meds, all the critical information when bringing home a patient who is still recovering. To say I was nervous about him coming home so soon- well, yeah, nervous is one word, scared as hell is another! I go back down stairs to be with Ty, he is waking up from anesthesia- he's stable and doing well. Fast forward, I am set to bring Ty home by 5:00pm.... Brian is set to head home at the same time..... okay- this should all be interesting is all I could think of!Brian's mom brings him home and they get to our house at 5:15pm... I arrive home with Ty at 5:30pm..... we walk in- something is burning on the stove leaving that old yucky burning smell throughout the house, cousins are over, sister in law, Brian's parents,.... well, coming home to a calm home was far from that... and Ty instantly has a visceral reaction to that smell and says "ohhhh gross what is that smell" and then says he doesn't feel good (he had already vomited in the parking lot.... this happens almost always after anesthesia with him, despite the meds......so I still have a recovering sick boy, I have a recovering husband and a house full of people that I know are all so well meaning.... but it was a lot and I myself was struggling to "hold it together"..... how do you politely ask people to leave when they are just trying to help.... but Ty was still vomiting... this pretty much sucked! Little by little, company left, little by little, things calmed down, little by little, we took some breaths and just sat! The girls were wonderful and helpful- this could not have been harder I"m sure for them.... pretty much either fending for themselves, or being watched by Aunt or Uncle (which I know they loved), but still not an easy time for them! They are pretty awesome girls I have to say- I was incredibly proud of both of them for just really trying their hardest! Okay, fast forward- it took Ty about the next 36 hours to feel better finally. Brian was still recovering, but little by little doing better then the day before. Would sometimes do too much, and then would regret it because his body would certainly communicate that message to him- by hurting!! Okay, again fast forward, bonding time between Ty and Brian was sweet to watch- they were both just starting to feel better, so lots of cuddles, lots of xbox, and more cuddles!Behaviorists had not been at our house during all this because Ty was not feeling well- he starts to feel better, then the following week, Megan comes down with something- fever soar throat thing..... so she's home from school, Sarah is at school, I'm getting to take Sarah to school and pick her up since Brian is home and Ty is exhibiting much calmness (so I feel I can leave Ty and Brian unattended for little bits of time)! I'm free..... that's kind of what it felt like- it had been so long. I had to run errands, go to grocery store, pick up Sarah from school. It was weird!!! Brian continued to recover, Ty was feeling better and beginning to, well be Ty- and I mean that in the most loving way, but he was certainly struggling with all that went on by this point! Megan after 4 days feels better and then Sarah comes down with the same virus - causing pink eye, and croup... yeah, this is life- So she's home from school and I am washing all things so no one else gets the pink eye... and she stays home from school for 4 days that week until all things clear up ( btw did you know you can't treat virus causing pink eye with antibiotics... it's a virus, not bacteria... school doesn't like that I can't treat her and just bring her back after being on meds... oh well)... anyway- she's had this a few times in her life, it's basically the cold has gone to her eye, but she recovers and luckily no one else got it!!)Okay, I'm trying really hard to fast forward my 5 week saga- it's hard! Finally Sarah goes back to school, Brian goes back to work part time on that 2nd full week of being home- and then he went back to work full time on the third week post surgery! Pretty amazing is all I can say. He continues to do wonderful, his body lets him know when he's done too much and the fatigue sets in sooner then pre surgery.... Beth the organ recipient continues to do well also, and is getting stronger and stronger every day! It could not have been a better outcome- and honestly I'm still amazed at the entire thought- take one kidney, put into another person- and waa laa, two healthy people... despite having one kidney each!!! Can you say flippin' amazing! And awesome!!! And nothing can be more delightful then to see this occur for two people you love! A miracle most definitely! Okay Brian has been back to work now going on week 3 (where the hell does time go), behaviorists are back in the house, routines are being resumed, girls are in school, life is returning to normal?, our normal?, a new normal? Heck, I'm not quite sure what it is- we're certainly still adjusting... but Ty and I are home all day with the behaviorists, Brian takes Sarah to school, Megan takes herself to school, and I have a few different people who so kindly bring Sarah home from school for me. My day is filled with working/playing with Ty (it's all purposeful behavioral program stuff), but also enjoying our time when they leave (like last night he and I made Thai food for dinner- pad Thai and Chicken satay- he is pretty amazing! After all our construction (which btw was crazy but a very nice distraction from all of this so that not every minute of everyday was consumed by well, all this other stuff going on- it was pretty minimal as far as how we were affected by it- thank goodness!!!)Anyway, now it's moving into our new master bedroom, organizing, rearranging furniture, and my favorite part - re doing furniture the way I want it to look!!! Megan has helped me with some of this- I was teaching her how to distress furniture- I very important skill in life of course !! lol..... Ty will occasionally come and participate, especially with the sanding, and well, it's my outlet, it's my joy, it's what I like to do- because otherwise, it's pretty hard staying home 98% of the time due to your son not being able to tolerate the outside world..... and right now, we're just getting him back to tolerate all thing within our house... it's been a pretty rough transition for him (and us) with Brian going back to work, behaviorists challenging him, and just getting back to a calm enough state.... but we're doing it! And all I can say after 5 weeks have passed, and the anxiety of knowing what was to come and not knowing how the heck little individuals would handle, tolerate, and be able to function through it all, how I would be able to deal with it all on my own at some points- especially when Ty was in the hospital and so ill himself...... I can honestly look back, say to myself, we did it! We got through it- we all got through it.... and as hard as certain moments were- we still got through it! We always do, and I know this because let me tell you how strong my husband and I are- well, we're pretty damn strong - but maybe now you can see why it was too difficult for me to sit down and write about my experiences while going through them still. I just needed to keep my adrenaline UP so that I could help my family, emotionally and physically help my husband and kids, and get through it all (more like a robot more than anything... not time to break down!)... just DO IT... so I DID IT! But I'm pretty glad to be grounded a bit now, to getting things back on track within our house, to spend sometime watching a show with the kids... one of my most favorite times of the day- watching our night time show- (usually Good Luck Charlie).... it's what we do.. and I love love love that Ty has been wanting to watch the show with us. And now that's all behind us- and I won't dread trying to sit down, and ponder my thoughts on where to begin- there's so much and my adrenaline for the most part is back in check :) I look forward to sharing some of my latest furniture projects, especially my new love for milk paint! OH Milk paint is so fun to work with... and Megan has a new room to make her own (our old room) and a bathroom- so lots of old new projects coming up... and I promise you there will be lots of milk paint, distressing, and colors! Can you think, purple, turquoise, lime green.... oh so fun.. and then it will be little Sarah's turn (well sort of, I told her I would paint furniture for her- but not the walls- they are already fun colors with fairies and frogs!! Well, lots of upcoming projects, the weather is starting to feel a bit like spring (despite completely jumping over winter with no rain here in California)- so here we go!
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