January 2013

Prepping for a contrast CT scan.  Such a good sport!

We are pretty cool.

Motoring!

Sierra starts writing her name this month!

Channeling Beethoven

He loves music just like his big sissy!

Sunshine!

She doesn't get to ride this very much at home on the gravel so we went to GG's for some sidewalks!

Jaxy's first time at bounce house.

Sierra loves this place!

Trying to do some fun stuff before daddy's surgery.  Jaxy's first time at the Osborne kiddie pool.

The sunglasses help her groove.

A ray of sunshine!

And goofiness.

No hands!

My daily hair treatment.

Dress up with my favorite princess.

Surgery is over and on his way to recovery!

FOOD!

By the end of December, Jesse was feeling quite a bit better after getting rid of the infection he had.  January was a month of trying to stay healthy and infection free so surgery could actually happen.  We had several appointments at OHSU and he had to be tested weekly to make sure the C-Diff infection hadn't came back.  He had a contrast CT scan which showed some improvement in inflammation but was still "impressive" to the Dr.  We also saw the stoma nurses who measured and marked Jesse for his possible ostomy.  Every couple of days he had to color over the marks to make sure they stayed until surgery.

We spent a lot of time at home trying to stay away from germs but did get out and about a little bit to do some fun things with the kids.  One of the restrictions after surgery will be no lifting over 10 pounds for at least 6 weeks, this means both kids will be off limits for Jess.  So we took a trip to the pool which Jaxon absolutely loved and also took trips to the bounce house and Papa's Pizza.  Jesse is still on a low residue diet, which means very little fiber.  He cannot have fruit or vegetables unless they are cooked very well and he is supposed to eat white bread.  A very unhealthy diet actually, but it is supposed to help keep inflammation down in his colon.  After he heals from surgery he will need to eat more fiber but should be able to return to a totally normal diet.

The kids and I have gotten so used to having Jesse home.  It's going to be a hard transition for them when he cannot play and an even harder one when he returns to work.  Some days it is so hard to look at the positives and I just want to let negativity take over my mind.  It has been one thing after another and the financial toll that it has taken on our family is devastating.  We met our out of pocket insurance expenses in December, but continue to get bills because of "non participating providers" IN THE HOSPITAL.  Apparently when you are in the hospital if a Dr comes into see you, you are supposed to say don't take care of me unless you are a preferred provider on my insurance.  Like that is going to happen.  Despite all the sick time donated to Jess, the county also decided that once he missed 90 days of work, they were going to stop paying him even if he hadn't been approved for disability yet.  His union president is fighting for us (that's what the $600 yearly union dues are for) to at least be able to be paid until we are approved for disability.  It's one thing to know that you have years of payments to make to the hospital, another entirely to think that you won't have a check to pay your mortgage.

But we have received generous help from our church and families and despite all of these struggles I have watched with joy as Jaxon has had so much time in his young life to bond with his daddy.  Sierra has always been a mama's girl and it is a blessing to have Jaxon be willing and excited to be handed to his daddy. Jesse has been home for so many of Jaxon's firsts, that we would have otherwise been at work for.  It is a struggle sometimes, but I really do try to search for positives.

Jaxon was weaned from nursing this month, right before Jesse's surgery.  After finding out that Jesse's surgery was cancelled again in December, it was like the straw that broke the camels back for me.  I really struggled with stress and my milk supply seemed to almost disappear.  Jaxon was also eating lots of big boy food, and was nursing minimally, so it wasn't really a big deal to him.  It was to me.  I wasn't quite ready.  He is my last and even though his one year birthday is only a couple of weeks away, I wanted it to be on my terms.  I'm sure I could have done several things to boost my supply, but the reality was that it would be easier on all involved for him to be weaned when I was away in Portland with Jesse for his surgery.  He handled it so well just like Sierra did when she was weaned.  It was really no problem at all for him!  I cried.  A lot.  He still gets a bottle before bed, but other than that, he's one step closer to being a big boy.  More tears.  Really I'm just an emotional mess, and I guess all things considered, that's okay.

Some big things this month:  Jaxon starts walking and Sierra starts writing her name.  Jaxon had been taking 2 or 3 steps in between objects for quite a while, but started taking 5 or 6 steps at a time on the 23rd.  There is still a lot of crawling going on, but I consider the little guy a walker!  Sierra has gotten back into reading again and will now sit still for a whole book or two or three.  And they can have more than one sentence per page and she will listen intently.  She'd probably have me read to her all day if I didn't have to get up every couple of pages and see where Jaxon has headed off to.  She eventually gets frustrated and heads off to "read by herself."  It makes me feel so guilty!  Jaxon gets his first upper molar this month and his attitude fits right in with a teething toddler.  He has started throwing temper tantrums if I tell him no, take something away, or if he cannot accomplish something he's trying to.  He gets frustrated VERY quickly if things do not go in his favor.  His tendency is to bite or push or throw.  While Sierra certainly had her moments as a toddler, she was not so physical.  This is something that is shocking and a little scary to me, and I'm trying to figure out how to handle it.  My family laughs and says, "He's such a boy!"  Very helpful. 

Jesse's surgery was on a Tuesday.  They don't tell you until the day before what time it will be so it was recommended that we stay in Portland the night before.  Jesse and his parents headed up to a hotel on Monday so he could start his surgery prep up there and I waited for my mom to get off work and come and stay with the kids and then I drove up by myself.  We ended up having to check in at 530 in the morning at OHSU, so staying up in Portland was definitely necessary.

We were both nervous about the surgery and we talked to several different Drs and the anesthesiologists before they wheeled him away.  I had expected to have a harder time than I did.  Something kind of turned off and I went numb.  We were told depending on the damage when they got in there, surgery could last anywhere from 2 to 5 hours.  So I headed out to wait in the waiting room with Jesse's parents.  OHSU has a neat system that allows you to really be up to date on your family members progress in surgery.  They give the patient a number and then post it up on a screen and it turns different colors depending on what part of surgery they are in.  You also get a call from a nurse in the OR every couple of hours.  My first call was after about 2.5 hours and the nurse stated that they found a fistula (a tunnel from the large intestine to the small intestine) and there were many more hours to go.  She also mentioned that his body was handling the surgery very well and his vitals remained strong.

After about 5 hours I got another call that they were finishing up and the Dr would be down in 40 minutes to talk to me.  It ended up being longer than that (over 6 hours total), and that was the most stressful part of the surgery.  The last hour, that was longer than expected.  All of the other numbers around Jesse's had been out of surgery and cleared out and Jesse's number was still there.  I started to get really anxious but eventually the Dr did come down.  Her first words were that it was very intense.  Three loops of Jesse's small bowel had been pulled down and attached themselves to his large bowel (colon).  They actually hadn't formed fistulas yet, but were in the process.  So they had to cut the three sections back apart and stitch them up.  They were able to do so without removing any of the small intestine though.  They also removed several feet of his colon like planned.  The Dr said after looking inside that she diagnosed it as diverticulitis.  But said it is very rare for it to pull down the small intestine too.  She said it certainly did not present itself as a regular case of diverticulitis, but that there are always anomalies.  She also told us that she was able to do all of this without giving him an ostomy.  She said, the next few days are critical and I really hope he stays together.  Not exactly what I wanted to hear, but she really made an effort to not give him an ostomy and she said that rather than opening him up completely they were able to hand assisted laparascopic surgery, so his incision was about 4 to 5 inches. They sent material off to pathology and so she wasn't able to rule out cancer or Crohn's with 100 percent certainty until those results came back, which generally takes about 7 days.

It was a very busy day at the hospital and Jesse had to stay in recovery for 3 hours before he was able to get a room.  You aren't able to see family members in recovery, so it felt like forever!  When I first saw him, I was terrified because he was a weird pale yellow color and he looked like he was in terrible pain.  But once they got him settled into his bed and started pumping him with fluids he perked up very quickly.  The pain actually ended up being minimal compared to his other flares, and he got better every day.  We missed our babies like crazy.  They have never really been away from us for more than 1 night, so it felt like an eternity.  My mom brought them up on Friday the 1st of February and it was so great to give them hugs and kisses.  The first thing Sierra did was run right to Jesse's bed and give him a big hug.  I stayed the night at Kevin and Helen's that night with my parents and the kids.  It was hard for me to leave Jess alone, even though he was doing fine.  I had been staying on a stretcher beside his bed since he was checked in.  The kiddos sure needed me though.  Sierra just hugged my neck and didn't want me to put her down.  Amy and Ben were even there, and usually if Ben is around, it's hard to get a word in to Sierra.  I soaked in the loves and headed back to the hospital the next day.  He actually ended up being released that day (Saturday the 2nd) after 5 days in the hospital.

All in all I really like his surgeon and think she did an awesome job.  I'm glad we made the trek to OHSU.  After so many failed attempts, and improper diagnosis in Corvallis, I'm just not sure we would have had the same outcome if the surgery was down here.  We'll never know, but I feel like we were led to the right Dr after a long process.  I think we spend so much of our life looking at how much better and easier things could be.  But while in the hospital I kept being reminded of how much worse things could be.  When Jesse was up and able to walk around, one of the loops we took was right past the Knight Cancer Institute Wing.  We thanked God every time we walked by that Jesse's recovery room wasn't in that wing.  And the Starbucks at OHSU is located in Doernbecher, so when I went to pick up coffee, I also repeatedly thanked God that we weren't up in Portland for our children.  The last 6 months have been very rough, but we have also been blessed.  Jesse is considered healed in 6 to 8 weeks and we can go on with our normal life.  He has a belly full of scars, and a few feet of colon missing, but he will be healed.  This is a reason to rejoice!


PS!  After this post was written, all pathology results came back negative for cancer or Crohn's!  Hallelujah!