Friday, September 25, 2009

Exersaucer Giggles

The other day I was home with Q and doing some closet-cleaning. So I popped him in the exersaucer right next to me and started entertaining him with songs and senseless pratter. He was having such a great time I had to grab the camera (aren't you proud of me, G?).

Mom, you're SO funny

Seriously, do that again

You're killing me over here!!

OK OK I'm pulling myself together

I'm so totally chill now

Aside from the total joy that is baby laughter it's nice that he's using the exersaucer now. He never was big into the bouncy chair and the swing has been losing its magic lately. Sometimes with Q it seems like he's just not really enjoying being in a baby's body. Every time he gets a little more mobility, picks up some new skills he's a much happier kid. The exersaucer lets him pretend he's standing for a while and he gets a pretty good view of what's going on around him. He also has access to a bunch of stuff he can cram in his mouth as well as that really fun noisey, spinny thing with the monkeys in it. It's the coolest.

Saturday, September 19, 2009

L is for....

The other day I was explaining to Lily that she would be going to hang out with our neighbors across the street for an hour before Daddy got home (Q and I were heading to Braintree to see my Dad). She wanted to know if Rex, their oldest son, would be home. I told her that he would be home, but that he had some homework to do before he could play. We then had this conversation:

Lily: What's homework mommy?
Me: gives some explanation about how when she gets bigger and goes to a different school she'll learn reading, writing, spelling and math. Then she will have homework to do in these subjects after school.
Lily: I can spell already
Me: oh yeah?
Lily: yeah, I can spell Lily
Me: OK go ahead
Lily: L .... I ..... O..... N!

so I dunno - luck? Or has something stuck in her brain from Gordon's "chalkboard animal" sessions? ha!

Thursday, September 17, 2009

Quinn: 4 Months

OK so back to some regularly scheduled programming for a little while as things have calmed down around here a little. Dad is still in rehab, but doing well. He should be coming home sometime in the next week. But more on that in another post...

While all this crazy stuff has been going on Quinn has been quietly becoming another month older. Hard to believe our little baby is 4 months old. Heck, I'm still confused as to why I'm not pregnant any more (maybe it's time to give up those maternity shirts, hmmmm). Since we've been pretty occupied lately we missed really watching Q change over this month. We just sort of looked at him one day and were like "wow, you're a lot older now kiddo".

So, in bullet-list form, here are some notables from the past month:
  • he holds his head up like a champ now - yay for the "no more worrying about head control" thing

  • he can roll both directions, though only seems to do it when he really wants to. Stomach to back happens pretty effortlessly. I've seen him go back to stomach, but less frequently. Usually there needs to be some promise of milk involved - like when we're nursing lying in bed in the morning.

  • he's very into his hands. He'll often sit there and sort of play with them - holding one hand with the other. It's awfully cute, but also makes him look a bit worried, like he's wringing his hands. Seriously, what does a 4-month old have to worry about??

  • he laughs out loud and it's awesome. He laughs when you tickle his tummy, rub noses and when I sing certain silly songs to him - especially ones that involve his name, like:
    "I love Quinny, I love little Quinny, I love Quinny, he is super-cute!" (sung to the tune of Alouette)

  • he still spits up. a lot. mostly on me. the end.

  • he had his first ride in a baby swing at Lexington Park. Same swing as Lily's first ride - although this time we have no pictures. I promise to get there with Gordon soon to fix that.

  • he's catching up on the growth thing. At his 4 month appointment he was 13 lbs 11 oz and 25 inches long. That puts him in the 25th and 50th percentiles for weight and height, respectively. Go Q and Mommy!

  • he's become a pretty great night sleeper. Some nights we'll get 10-11 hours from him and he rarely has a night when he's up to eat more than once.

  • he's not such a great napper during the day - lots of cat naps, but rarely longer than 40 minutes at a pop. I am hoping this changes.

  • the swing has lost some of its magic, although the stroller and car are MUCH more acceptable now. He never cries in the stroller any more and is much much better in the car. Thank goodness.

  • his smile absolutely melts me - and most other people who witness it. He is a total flirt.

And now, some pictures (just for you Yeh-Yeh!)

Mommy's boy

My Jeh-Jeh loves me


mmmm this doll is tasty!

doing that hand thing I do

Dude, look at me hold up that head of mine!

Daddy likes to pose me

Sunday, September 13, 2009

A Little R&R....

.... though not the kind you're thinking about - Reunions and Rehab! (but ugh - *I* could sure use some rest and relaxation - anyone want to watch the kids while we escape to an island somewhere?) This past Friday, 9/11, Dad was moved from Rhode Island Hospital to Braintree Rehabilitation. And although I appreciate EVERYTHING that was done for him at R.I.H. - if I never see that place again it'll be too soon. He had really awesome care there - I just got to know the waiting room outside the INCU a little better that I needed to. I was also pretty done with sandwiches from Au Bon Pain.

Since my last post earlier in the week, Dad had been improving steadily in the step-down unit at R.I.H. I was able to call his room and he would answer the phone. We could have real phone conversations - something that was nearly impossible just a week ago. My Mom brought him his cell phone and he was able to make calls out to us. I can't even begin to find words to express how awesome it was the first time my phone rang at home and he was on the other end. He had another swallow evaluation and passed this time - so the feeding tube was clamped off and he started eating real food again. Finally, the Foley catheter was removed as well.

Braintree Rehabilitation went into R.I.H. to evaluate him on Tuesday and by Thursday he had been approved for transfer there. He was transferred Friday afternoon, so our next visit with him was in his new setup. Our excitement about not having to shlep all of us to Providence/Fall River ever weekend anymore was slightly dampened by the 1.5 hours it took to drive the 18 miles from Somerville to Braintree that night. I was particularly insufferable on the drive because I was SO EXCITED to finally get to bring the kids to visit Papa for the first time since this all began.

Dad had been asking steadily for the kids and I felt awful about not bringing them to see him. At first I couldn't bring them into the INCU due to their rules. Then I was advised not to bring them to the step-down unit either because he was still being treated for the C. Diff. It wasn't until the move to Braintreee that he also got the "all clear" on the C. Diff. infection.

So after battling the Friday traffic out of Boston we eventually made it to Braintree and into Dad's room. He was so happy to see Lily and Quinn, and Lily was just as happy to see him. Q is still a little clueless in this area, but he smiled a lot. Here are some pics from their reunion. Sadly none of Quinn and Dad together, but I'll be sure to get one of those in the next few days - especially since they have matching hair-dos right now.

Saying hello

"Can I mess up Papa's hair?"

Best Buddies

Quinn was there too!

And Dad - well as you can see here - he looks terrific. He's anxious to get going with his rehab full force. He's had a few sessions, but not much since he got there on a weekend. Tomorrow begins the real deal and he's got a really great attitude about it all. He's looking better and better every time I see him walk and was able to do part of a crossword puzzle with me today. I'm so proud of how far he's come already. Feels surreal, but tomorrow it'll be one month since the SAH.

Wednesday, September 9, 2009

Agnes "Reggie" Castanho: February 5, 1920 - August 17, 2009

Agnes, Mom, Grandma, Grams, "Beema", Auntie Reggie, Madrinha
She went by many names, played many roles, evidence of all the lives that she touched.

Thanksgiving, 2008

Grandma said her goodbyes on August 17, 2009 and moved on to a more peaceful state. She left behind the nursing home and staff who loved her, her daughter and son-in-law, her grandchildren, her great-grandchildren, her many nieces and nephews, her godchildren. She said goodbye to us and went to be with her sisters and brothers and her beloved husband, Daniel. We are all so sad to see her go, but so happy that she was with us for 89 years - that we had all this time with this wonderful woman in our lives.

with Eric, on her 80th birthday, 2000

When I was little my Dad used to travel quite a bit for work. My Mom's parents, Grandma & Grandpa, lived in Fall River and spent a lot of time with us. They never lived with us, but they were over nearly every day. Grandpa would spend hours and hours playing with me. Grams cooked dinner with Mom nearly every night. They were permanent fixtures in our home and such a huge part of my childhood. As I grew up, I became enmeshed in friends and the like, but I would still spend one night each weekend sleeping over their house.

with Gordon, Thanksgiving 2002

Grandpa died suddenly when I was in 5th grade. It was my first experience with death, the first time I lost someone I loved dearly. Grams was an independent lady and would not even consider moving in with us. We did find her a smaller place, closer to our house, but she clung to her independence. The summers following I would routinely sign up for Girl Scout camp and then back out at the last minute. I was terrified that something would happen to Grams while I was gone. I needed to be around, to see her everyday - to keep an eye on her so that she couldn't leave unexpectedly.

with Victoria, January 2004

Growing up we had had a Sunday dinner tradition at my house. Grams was the cook - she made clamboils, pot roast, stuffed shells, spare ribs. She made us our favorite cakes on our birthdays. Eric and Dad always got her pistachio cake -with green frosting and chocolate chips. I got a vanilla cake with a sugary strawberry frosting that I just loved. My high school boyfriend, Mike, and I would get into fights over that cake. I always thought his pieces were just a little too big. I wanted to save the cake as long as possible. I always ate the cake first and saved the frosting for last. When I was a teenager the Sunday dinner thing annoyed me of course, but now I'm so glad I have all those memories.

Christmas, 2004

I went to middle school and high school and then college. Grams and I were always close - she loved both my brother and I so much and she told us that all the time through her letters and her actions and her hugs. Eventually I stopped sleeping over, but we always got together for lunch or breakfast when I was home for the weekend. When I left home she wrote me letters all the time. She'd write them while waiting for the bus or waiting for a batch of her famous rice pudding to cool. She lit candles for me in churches all over Fall River whenever I had a presentation to give or a big exam at school. She sent me money - $40 when my wallet was stolen, $50 when she got an unexpected insurance payout, $50 when she got her tax refund. She was such a generous soul - always sharing and giving. Her one "vice" was a yearly gambling trip in Atlantic City with her sisters. And if she came home a little richer she promptly shared her winnings with us.

with Eric and I, 2005

I often brought friends home from school with me and Grams always remembered them and asked after them in her letters. "Say Hi to Arthur" she scribbled at the top of one. "I was so glad to meet your roommate Corinne, what a nice person she is. I hope to see more of her!", she said in another. Her generosity was never-ending. She took care of her friends who were aging a little faster than her. She took the bus all over the city to accompany them to doctor's appointments, to mail their tax returns. She didn't have a car, but that never stopped her. She went everywhere by bus and on foot after Grandpa died.

with her grandkids, Christmas 2007

At the end of 2002, Grams suffered a stroke and was never really the same. The prolonged hospital stay accelerated the Alzheimer's that was already beginning to take hold. Prior to that there were little warning signs - a forgotten ingredient in a recipe, misplacing her purse, getting a name wrong (I went from "Becky" to "Bev" quite often in this period - but there ARE two Bevs in our family!). Soon after we had to move her from her apartment into Somerset Ridge Nursing Home - where she lived the remainder of her life. Even as the Alzheimer's dug in deeper, taking her away from us, she remained sweet in nature and generous in spirit.

with Lily, Thanksgiving 2007

If I close my eyes and just let my thoughts drift while I think about Grams I see images of the apartments she shared with Grandpa. I remember sitting on her lap while she let me "play" with the loose skin on her upper arm. I remember countless clamboils. I can see her at our kitchen sink, doing dishes with my Mom nearly every night. I see her in her apron, the pockets stuffed with paper towels that she carried around just in case something needed wiping up. I remember trips to Bickfords and Newport Creamery for breakfast. I remember feeling so very loved.

Easter, 2009

Grams was the last living sibling in her family. She had 10 brothers and sisters - all of whom passed on before her. She was close to her siblings, especially her sisters. Many of the men died young, before I was born, so I didn't know them very well. The one exception was her brother Billy (Uncle Butch, we called him) who always joined us for Sunday dinners at our house. Her sister Nina lived in Jamestown and Grams would spend a couple of weeks with her every year. Through her example and her steady love she taught me about the importance of family. She was very special to her nieces, nephews and godchildren as well. We all loved her dearly and we will miss her.

four generations, Easter 2009

My one big sadness is that she didn't really get to know Gordon, Lily and Quinn. Gordon came into my life less than a year before she had her stroke. She seemed to know him when we'd go visit her, but he never really got to know Grams they way I would have liked him to. Lily had 2.5 years with her Vo-Vo - and we took her to visit often. Grams face always lit up when Lily was there. She only saw Quinn once, but I am glad that he got to meet her before she left us. I know that without the Alzheimer's she would have had unbounded love for her great-children. I am happy that at least they did bring her joy, even if they did not get to know her the way that i knew her.

Saying Goodbye, August 2009

On October 4th, a number of us will be doing the 2009 Alzheimer's Association Memory Walk in her name. Lisa, Eric and Victoria have put together a team, Reggie's Runners - and Gordon, Lily, Quinn and I will be walking with them this year. If you've also lost someone to Alzheimer's and would like to support our team in their name or in Grams' name you can do so here.

Tuesday, September 8, 2009


When Eric got to the hospital Sunday morning he discovered that Dad had been moved from the INCU! Such a big step and one we had all been waiting and hoping for. He was set up in his own room when I got there. The only tubes left are the feeding tube and the foley catheter. Sunday was kind of a rushed day as we spent the beginning of it at the yearly family cookout at my cousin Lisa's house. Then we rushed home for naps and I went to Providence for a quick visit. Dad was OK on Sunday, but not as good as the day before. We were told that the C-PAP machine they had given him for sleep apnea had kept him up all night and he was mostly just sleep deprived. As a result he wasn't super engaged that day and some of his conversation was pretty confused. It was a little disheartening to see him that way after the great day on Saturday, but we reminded ourselves that there would be ups and downs and took it in stride.

Monday was our last day in Fall River for this trip. Gordon took the kids to the Providence Children's Museum in the morning while I went to the hospital. Dad was sitting up and looked really good again. I could tell immediately that he was having a good day. We talked about a ton of stuff and he signed his name for me on this TDI application. We talked about the home finances I had been taking care of for him. He inquired after bills and payments, making sure I had made them correctly. He said he wanted to talk to a doctor so that he could get started on his rehab. He complained that the hospital was boring and he was ready to get back on track. He seemed totally aware of all that had happened to him and how lucky he was to be with us still. He also seemed eager to get to work so he could get back to his life.

When Mom got there she told him that Grams had passed away while he was in the INCU. It was hard to watch him digest that news. He told me later that he had a feeling something had happened to her. My heart broke for him as I watched him process that it had all happened while he was away from us - that he wasn't part of saying goodbye to her. Grams had been a big part of all of our lives and my Dad was very close to her. It was a running joke in our family that Grams would always tell my Mom (her daughter) how lucky she was to have found a guy as good as my Dad. In her eyes he could do no wrong (sometimes much to my Mom's annoyance!) Granted, none of us have really gotten to grieve for Grams, but Dad is especially far behind here. This news stuck with him though - he told my brother that we had told him when he got there. And later on he gave the news to my brother's girlfriend by phone. Grieving her loss will be a process for all of us, but especially for Dad. I hope that when we are on better footing we can have a special day together to remember her.

It was hard for me to leave the hospital yesterday. I wanted to stay there and just hang out with him. We played some simple card games again. We talked more Star Trek. We laughed about how he categorizes his spending in excel spreadsheets. I asked him what "box" meant and he cracked up. Apparently he started putting $100/month of "fun money" in a box over 20 years ago. Over the years he gave up the physical box aspect of it, but still sets aside "box money" each month in their budget. My Mom didn't even know about this aspect of his accounting. "No wonder you spend hours in that office when you do bills", she said. Ah - the apple doesn't fall far from the tree indeed!

Eventually I had to leave and return to Somerville for Lily's actual first day of school and our lives here. The hardest thing now is feeling torn between Dad and my children. Having him "back" makes me want to just move in to the hospital and hang out with him - enjoying his company and basking in the fact that he is still here and still very much HIM. But I have my own family too - and they need me as well. So it's all about balance.

And just so you don't think Lily and Quinn have been totally neglected during all of this... here are some photos of their weekend. Thankfully they have quite possibly the best Dad ever and he spent all his time caring for them and showing them a good time. I'm very lucky to have such a supportive, hands-on husband during this rough patch. I've had lots of space to do what I need to for Dad and the rest of my family. It's been challenging, but I can't imagine what it would have been like without Gordon's help.

Lily, making her Mom proud

Riding the swan boats at Roger Williams Park

Quinn, unaware that Papa has given him the nickname, Oblio

Hugging the man at Caserta's, our favorite Providence pizza

Lily and her favorite cousin, Victoria

at the Children's museum

Saturday, September 5, 2009

Star Trek and WWII: Dad Returns

Gosh I really thought I was going to get caught up on these posts while home in Somerville - that I could start posting things in "real time". Well I failed. I guess it's because when I go home I tend to spend the evenings catching up - doing our bills, doing laundry, sleeping, talking with friends - and then packing again for the next journey down to see Dad. So that's what happened.

Now, we are back in Fall River - staying with Bev & Gail who have so generoursly opened their house to us, all four of us. Remind me to write a post about what a super-awesome, terrific family we have and how lucky I am. Really.

We got here yesterday, and I was anxious to see Dad. I hadn't been away from him this long since he got to the hospital. In addition the reports from Gail and my Mom had all been good. Gail had been up to see him a few days and always called with good news. He was sitting up, talking with her. Each day the converstaions were better, he was more engaged, more THERE. One day I got two phone calls from my Dad. It was hard to hear him on the phone, so real conversation wasn't possible. But it was still so lovely to hear his voice. There were some dips at night - when he was tired and they gave him medications to sleep. Sometimes he'd been really really confused and kind of dellusional. My brother was there for all of that - it was tough on him to see that, disheartening. On Wednesday he had the feeding tube removed from his nose and a more permanent one put directly into his stomach. We had all hoped he could just do without it altogether, but since he hadn't passed his swallow test this was the next step. It would be more comfortable than the nose tube for him and posed much less of an infection risk. So while not the greatest thing, it wasn't bad news either.

When I got there Friday he was sitting up and looked better than I had ever seen him. His eyes were clear and focusing - he could follow what was happening on television. We talked alot; we laughed; we enjoyed each others company. I pulled out the deck of cards and we played a simple matching game. He did pretty well, but got tired about halfway through, so we took a break. I found out that his EVD had been clamped off that morning and would be removed the next day if all continued to go well. I left that evening so very encouraged.

We went back today and it was even better. First off, the EVD is gone - totally gone! No more tube stuck in his head, no more bag of cerebral spinal fluid dripping slowly and changing color day by day, no more obsessing over if the drain is levelled correctly with his head. When I walked in Dad proudly announced that he only had one more tube in him (in reality it's two, but I think he forgets about the feeding one). It's hard to put into words what it felt like to be sitting there talking to my Dad - and he was my Dad. There are still some moments of oddness to his conversations - sometimes it's hard to tell what's true. For example we told him we were going to Caserta's (a favorite Providence pizza place) for lunch and he started talking about the "Acorn Tap", a bar that used to be right next door to it when he was a kid. He was talking about how they had a giant urinal there - like huge. And something about them auctioning it off when the place was torn down. I did google "Acorn Tap" and Providence but didn't have much luck confirming the existence of the place, never mind the features of the bathroom fixtures (Google only returned one result!). But - oh! - there was so so so much good - I can't really form paragraphs anymore, so here's a bulleted list of highlights:
  • We had a long, in-depth discussion of two Star Trek epsiodes from the original series. My Dad is a huge Star Trek fan and has recorded the entire original series on VHS. He knows them all and today we were talking about how the world is becoming more and more computerized. I started talking about "the singularity". Eric then started musing about the overcrowding conditions that would result if no one dies. Dad breaks in with a description of this Star Trek episode about an overcrowded planet. Then I make a comment about how ahead of its time that series was. He emphatically agrees and tell us about another episode, one of his favorites. He remembers all of it - right down to the appearance of Frank Gorshin.
  • Another conversation revolved around a book he was reading before all this happened, War's End - a book about the atomic bombs dropped on Japan in World War II. He told Eric and I - in great detail - about the different bomb designs, the different detonation devices. Sitting there listening I got curious and started flipping through the book. I found many of the terms he was using right there. I'm not sure that he was 100% accurate on all of it (I just don't know enough) - but he was certainly damn close.
  • We played our simple card games again - matching and putting cards in order. When we started the matching game he wanted to know if there was any advantage to matching a king to a king - he was looking for hints on strategy. I told him it was just a simple matching game. He played willingly and commented that this was the kind of stuff that the doctors would want him to do in rehab. He totally got it that it was good for him. He performed great too. We got through three whole games this time and he held the cards in his hand the whole time.
  • He asked to stand up. The nurse and Eric helped him. He stood, he moved his feet around. He sat back down. He told us "I know it's going to take some time. I'm going to stand and walk every day until I'm better" (I'm paraphrasing a little, but that's the gist)
  • Eric's girlfriend Liza came to visit. He called her Heidi at first, but then corrected himself. Later he told us "Liza just has to understand that that will happen sometimes at first, but it will improve and go away. I just have to always get Lily's name right. It would hurt her more than it would hurt me if I got that wrong".
  • He ate applesauce - the first thing he's eaten in three weeks. They offered him ice cream and pudding, but he turned those down (doesn't care for sweets). They offered applesauce. He said "is it sugar free? Because I only eat the all natural kind" - and that's true. It was the right kind and he ate it all. He told me it was excellent.
I know there was more, but those are my highlights. I found myself sitting there so so thankful to be WITH him again, with my Dad. I could feel the flood of emotions that I've been keeping in check for the last three weeks as we all held our breaths threatening to overtake me. I'm afraid to feel too hopeful. It's scary to see the man that I almost lost sitting there again in front of me and to wonder if he's going to really and truly be back to us. I don't want to lose him again, not like this and not yet. We have more time with him left - there's more to be done.

Another improvement that I saw today is that he can now recall conversations he had earlier in the same day. Before I got there he was talking to my brother about a character from The Point, Oblio. He said that he and Quinn both looked like Oblio (because they are bald and round-headed). My brother had no idea what he was talking about and Dad said "ask your sister, she'll know". When I got there Eric didn't say anything, but a little while into my visit Dad said to me "Becky, tell Eric who Oblio is". Up to now he's always had a lot of confusion about the present. Even when his recall of the past had been good, his recall of who had visited or what had been talked about was nearly non-existent. So this exchange was awesome.

So now with the drain out they are talking seriously about moving him out of the INCU. He'll go to a step-down unit in the hosptial first and then will move to a rehab facility. Now I'm trying to figure out what consititutes a good brain injury rehab facility. We're looking at Spaulding in Boston as well as Braintree Rehabilitation Hosptial. It seems like things are going to start moving fast now. I love that Dad currently has such a good attitude about the rehab - I hope it sticks. He seems really anxious to get started on it. He wants to get back to work. He desparately wants to see his grandkids. When I walked into his first words to me were "there she is, babyless again!" I so so so wish I could bring them to him.

OK I'm tired, I need to sleep before Quinn wakes for his night feeding. Thanks everyone for the thoughts and prayers - they've meant so much, please keep them coming. We've still got a long way to go, but it seems like a corner has been turned. I'm scared to publish this, scared to be so optimistic, scared to feel any relief. But I'll do it anyway. Welcome back Dad, please stay with us.

Tuesday, September 1, 2009

Return to Somerville

OK so here we are - Tuesday Sept 1. I spent two nights in Fall River this weekend and one extra night in Canton. We got back to Somerville last night. So where are we now?

Dad's still awake. He still has the EVD - although they moved it from one side to the other on Saturday (Friday?) to prevent infection. He's had good days and bad days. Some days we go in and talk to him and we can really talk to him. Sometimes he's confused, other times he seems pretty okay. Sometimes he jokes with us, other times he seems really uncomfortable and agitated. He asked me how many pictures I could fit on my iPhone one day. He wanted to know if a Law & Order episode would fit on there. During some conversations I could almost feel his brain trying so hard to heal and make sense of his situation. One time he asked me what he needed to do to "solve this problem", what he needed to be thinking about. He asked us what the password was that would get him out of the hospital. God, I wish I knew the answer to that one.

I've been doing the finances and such for my Mom during this time. It's so strange, sitting there at my Dad's desk, writing his checks, going through his statements and bills. I don't want to be there - it's his place, his stuff - not mine. Thankfully though, Dad is meticulously organized (apple? tree?) so it's a really easy job. The night that all this happened he had returned from a business trip. So I've been working on his expense report from that trip. I mentioned this to Dad and he started talking about how the Memphis expenses were somewhat mixed up with the Manchester and Philadelphia ones - two trips he had taken just previously. He then told me to "have my mother sort it out". Then he joked that if I did that she would probably "shoot him" for "making her do work". It was really comforting to hear him recognize the trips he had taken and talk about them like that.

Monday was my last day at the hospital before returning to Somerville for a few days. I thought that Lily's pre-school started this week, but I was a week off. Let me tell you it was not a pretty scene when I showed up there this morning with a little girl ready for her first day of school only to find the teachers and everyone engaged in "prep week". Lily handled it just fine. I had a complete and total breakdown. I felt so incompetent, so embarrassed. It was like the thin veneer of "keeping my shit together" just came apart in that moment. The reality of how hard it is to deal with Dad's situation while keeping my head screwed on tight enough to take care of two little ones finally caught up with me - right there in the pre-school classroom. I've been feeling so bad about not being fully present for Lily. She's been with someone different every day, sleeping in different houses, beds, floors. And she's been great - so resilient, as kids often are. But I feel so sad that I can't be here for her more fully. I know it's just a blip in her life - it should hardly register. But geez, couldn't I at least get the first day of school right? The director and teachers were totally awesome about it. I still feel like a total moron - but at least they seemed to understand.

Anyway, when I left Monday Dad was not doing so hot. His breathing was an issue again - he sounded kind of awful. They were trying a C-PAP machine for help with his sleep apnea, so we couldn't really talk to him much. He had stridor, a high-pitched sound during inhalation, making it tough to sit by him. He just sounded so not good. They sent an ENT resident down to scope him and discovered that his airway was all swollen. I guess it's common for that to be the case after a prolonged intubation, but he had been off the vent for over a week already and should have healed up. When I left they were giving him steroids to help bring down the swelling. I was really sad to be leaving on a low note.

That night Mom told me the steroids had worked and he was resting much more comfortably. She was going to go to school for her first day of work today, so our cousin Gail went to see Dad instead. She called me just before lunch to tell me that he was doing really well - sitting up in a chair, very alert, having good conversation. So now we are hopefull again - the doctor's seem to think he's heading for a "break" - a point in these cases when things just suddenly get a lot better. Fingers crossed that this week brings good things.

Conversations and More Waiting

Two Sundays ago - 8/23 - Dad's pneumonia was under control enough such that they could remove the breathing tube. He had been doing most of the breathing on his own anyway, with the machine just providing a little extra help. I saw in the middle of the day. He was just starting to wake up a bit. He would open his eyes and look at me. He seemed to see me - he moved his lips as if he had something to say. But he was still very in and out. We went back to my Mom's in time for dinner and my brother went to spend the evening with him.

Eric called us at my Mom's to report that Dad was now talking. At first he was a little random - asking for his wallet, worried that the nurse was trying to steal his money as they rolled him over. But then he cleared a bit and asked for Lily and Quinn. They asked him how many children he had he responded that he had 2 children and gave them our names when prompted. He passed his neuro exam (squeeze my hand, stick out your tongue, etc) with no problem. He knew my brother's girlfriend and asked after her parents. At one point Eric called us and put Dad on the phone. He said "Hi Becky". It was truly the best thing I had heard in a long, long time. It was hard for him to talk though - his trachea was beat up from having the tube down there for a week. He was still disoriented. But he was awake - and he knew us.

I stayed down in Fall River that night with Lily and Quinn. Lily spent Monday with her cousins having a day of fun that involved carousel rides and play-dough. Quinn came to the hospital with me and Mom. That day started off awesomely when we got to my car and realized that Gordon had taken Quinn's car seat home with him to Somerville (damn you Graco and those easily swappable base-things!). After some panic, we found a car seat through a good friend of my Mom's and off we went.

It was so so great to see Dad awake that day. We had some actual conversations with him. Of course at first he told us that he was going to sue the hospital because he wasn't sick yet they'd kept him there for 9 days and kept sticking needles in him. He told me it was a money-making scam and that he should be at Charlton in Fall River. It was definitely hard seeing him so confused about how sick he really is. But there was a lot of good stuff too. He talk about seeing Lily and Quinn alot. He got me to run out to the waiting room to take pictures of Quinn with my iPhone. He asked me to bring him more pictures of them - said it would help him alot.

Since I'm writing this over a week after the actual visit - a lot of things have blurred together. Something I forgot to mention in my last post was that the attending neuro had told us that his latest MRI showed that he did not have any major areas of stroke or damage in his brain. So we were all hopeful that perhaps he could recover from this and be largely Dad - that we would get him back. Seeing him talking and asking for us all strengthened that feeling of hope. It was a good day.

Monday night I went back to Somerville - my Mom and I needed to get a little space and Lily needed some semblance of normalcy. I stayed at home for two nights and then drove to Canton on Wednesday to stay with a dear friend who had generously opened up her house to us as a "base camp". I went back to the hospital Wednesday night on my own. Things had slipped a little since I was last there. The antibiotics used to fight Dad's pneumonia left him wide open for an infection known as "C. diff". So now all staff had to be gowned when they entered his room - I started wearing gloves on my visits to protect the babies at home. Dad was still awake, but he was sick with something new and became less engaged, more sleepy. By Friday the renewed hope and energy we had felt from the weekend started to fade. It seemed like we were plateauing again in a new limbo - with no end to the ICU stay in sight.

We talked with doctors again on Friday and they confirmed that his alertness was not like it had been. There was good news and bad. His clinical tests were all good - no more vasospasms, the hydrocephalus was still an issue, but improving. He took a swallow test that day to see if he could come off the feeding tube. The results were inconclusive and they had to keep him on it. No one was really sure why he wasn't doing "better". Current theory was that the c diff was making him feel lousy and his injured brain was shutting down a bit more to deal with that. There were some other factors too that could be playing into it: low electrolytes (not sure why), some medication he was on for some other thing that has the unfortunately side-effect of making one confused.

So here we were again, waiting for things to reach the next level of improvement, waiting to take the next step along this long long road to recovery. Friday night I went home to Fall River with Mom and Quinn, while Lily and Gordon went back to Somerville. I began to seriously wonder how long we could keep up this nomadic lifestyle. I missed our old life - the uncomplicated, easy one that had seemed so complicated before I knew better. But most of all - I just really really really wanted my Dad back.