Tuesday, January 8, 2013

November

Jumpers!

Jumping with his firetruck.  A noisy past time.

Quite the outfit.

Such a nice sister to share!

At the end of daddy's week long stay in the hospital:(

These kiddos missed this guy!

Sierra.

Happy to have daddy home!

Tea party on a laundry basket?  Of course!

Such a joyful child.

Snuggles in stockings.

Christmas fairy outfit
WARNING LOOKING AT THESE MAY MAKE YOU PEE YOUR PANTS!

Pre-breakfast Christmas card photo shoot FAIL.  We started out ok....
 

And things go downhill from here!









I managed to get ONE. I was so frustrated, but when I looked back later at the pictures I laughed so hard.  Now I'm so glad that I have them:)

I can easily say this is a month that I hope we NEVER have to re-live again.  After Jesse was sent home from the hospital at the very end of October with no diagnosis or instructions except to make a follow up with a gastro, we tried to carry on with our life.  After missing almost a month of work with the appendix removal, Jesse had exhausted pretty much all of his sick leave and vacation (praise the Lord he had so much banked).  He was pretty desperate to get back to work even though he was still feeling under the weather.  We had no diagnosis yet and so he put pressure on his Primary Care Physician to release him back to work.  First the Dr said no, that he needed to take the antibiotics for a little longer.  He told us (yes I went to make sure Jesse told the truth about still feeling like crap) that once Jesse's pain went away, he would do another exam and release him.  Jesse had a big project going on at work and got his Dr to come in on his (The Dr's) day off the following Monday to examine him again.  I didn't go this time because it was the kids' nap time.  He came home with a signed letter to return to work.  I was worried sick, but knew that it was stressing him out to be missing work.  So he returned to work roughly a week after his hospital stay with a possible perforated colon.

He was glad to be back and was very busy at work.  He still had pain on and off but not as severe as the episode at the end of October or mid September.  He had an appointment with the Gastro and scheduled a colonoscopy and endoscopy to take biopsies and test for Crohn's, Celiacs, and just get a general inside view of what was going on INSIDE the colon.  His CT scan mostly showed a general perspective from the outside.  He continued to take his antibiotics.  6 days after going back to work the phone rang 3 times while I was struggling to get Jaxon to go to sleep for his morning nap.  I was so annoyed.  Then it rang a fourth, then my cell rang.  I put Jaxon in his bed and answered just in time to hear Jesse saying he was in excruciating pain and heading to the ER.  He sounded awful and pretty much just hung up the phone.  I didn't know how he was getting there, what was going on, and he didn't answer when I tried calling him back.  I tried to not have a panic attack because Sierra was awake and ready to play, luckily Jaxon had fallen asleep.  

I didn't call anyone wanting to leave the phone line open in case Jess called back.  I waited and waited and finally he called back using the phone in the ER.  He could barely speak and said he was in the worst pain he'd ever been in.  I called both of our parents and waited for my mom to get off of work and come watch the kids.  His mom headed to the ER.  I got there about an hour after his last call.  He looked horrible, the pain meds did not help this time, and he wasn't really able to answer any of my questions.  We waited and waited and he had another CT scan.  The scan showed the same "mass" around his bowels.  There still weren't any answers and after about 6 hours in the ER he was given a room in the hospital.

He was in the hospital for 7 days.  7 days!  He had test after test, was unable to eat, was on so many pain pills he was incoherent most of the time, and we received different information from every Dr we saw.  Crohn's was mentioned frequently again until his colonoscopy on the 4th evening.  The Gastro said he found some diverticulitis and that he did not feel it was Crohn's (yet he did not take a biopsy to prove this).  We were all relieved but he did say that he felt Jesse was definitely going to need surgery because parts of his colon were scarred, narrow, and twisted.  We were just glad to hear that Crohn's was off of the table.  After the colonoscopy Jesse was given by IV another type of antibiotic and we were told that we just had to wait for his body to start to heal.  By the 6th day he was up more, ate some broth, and was finally not needing so much pain pills which also helped him stay awake more.  During the 6th night, one of the night nurses said that it looked like we would probably be in the hospital for Thanksgiving.  We were bummed but had kind of been expecting that considering he still could only eat broth.  So we were shocked when the shift switched the next morning and they told him that he would be going home today.  He still hadn't had hardly anything to eat, still was running a fever (it was right at 100 instead of 103 though), and still was having pain.  We were scared and confused but going home did sound good.

Jesse was discharged after lunch and we headed home.  He went straight upstairs and went to bed.  And pretty much all he did was sleep for the next couple days.  The kids and I tried to keep to ourselves while I struggled to get him to eat and drink and begged him to get up and move around.  Talking to him was sort of like talking to a grizzly bear that was in hibernation mode.  I won't go into details.  Thanksgiving came and went.  We had a simple dinner at his parents house and I decided to let Sierra spend Thanksgiving with my parents up in Portland because I knew she'd have fun with her aunties and uncles.  I cried as they drove her down the driveway because I had so been looking forward to Jesse being home and us all being back together for Thanksgiving.

A couple days after Thanksgiving Jesse finally started getting up and around and wasn't quite so grizzly bear like.  While in the hospital he had started having a lot of pain and swelling in his left arm where the IV was.  I kept mentioning it to the nurses and they just sent in warm towels.  After Jesse complained several times they finally switched the IV site to the other arm, but the pain and redness did not go away.  I asked before they discharged him, but they weren't worried about it and sent us home.  After going his arm continued to ache badly and he started getting more and more swelling in his tricep area.  It was red and hot.  I finally decided we need to go the ER.  He tried to refuse because he was sick of that place, but eventually gave in.  After checking in they gave him an ultrasound and discovered a blood clot in his arm.  It was originally dictated as a deep vein clot, so they sent us home with a kit to give himself blood thinning shots twice a day and put him on Coumadin.  It was a Saturday and we were supposed to pick up a prescription for the rest of the shots the next day.  A Sunday.  Needless to say the next morning we drove around and called every pharmacy nearby that was open and nobody had the shots he needed.  We had to go back to the ER and get the prescription changed and they called in the change to Fred Meyer.  I highly recommend Fred Meyer's pharmacy.  They have been very accommodating through all of our prescription needs over the last several months.

I was picking up some groceries while Jesse went to pick up the script.  He came back empty handed and said that it was going to cost $800.  What?!  I marched back over with him and told him they needed to call our insurance company that after the thousands in hosp bills we had been billed, we should only have a copay.  He called them and said they said that with the write off they lowest they could go was 600.  So I lost it.  I cried.  I manage to stay strong when the big stuff is hitting the fan, but when the things that should be simple, don't go simply, I lose it.  The poor pharmacist felt terrible and ended up discounting the prescription to $200.  We were very thankful!

We had an appointment the next week with the surgeon and had to tell him about Jesse's clot.  At that point he looked over the ultrasound and said that they dictated wrong and that Jesse's clot was superficial.  So the freaking shots had been unnecessary.  But, the clot was a worry enough to put surgery off.  So Jesse got taken off the pills and injections and was put on aspirin.  At this point we were seriously starting to doubt the WHOLE medical profession and wanted this nightmare to be over.  It was also then that the surgeon mentioned that because a biopsy was not taken to rule out Crohn's, Jesse still had a 10 percent chance of having it.  We went home frustrated and disheartened.  A ultrasound was scheduled for the next Monday to if the clot was clearing.

The ultrasound showed that the clot had not changed in size.  We were given instructions to keep him on the aspirin and surgery was rescheduled for December 17th.  We are hoping and praying that he does not have another hospital visit before surgery!

The kids handled all of this craziness amazingly well.  They were passed from grandparent to grandparent, house to house, and brought to the hospital so that I could nurse Jaxon.  We are so blessed to have grandparents nearby!  Jaxon handled the different nursing schedule just fine, the kids took good naps for their grandparents and went to bed like big kids.  It was always a relief to come home in the evening and get excited hugs and raised hands from my babies.

Sierra is in the height of a princess phase.  She wakes up and before she is even totally awake, rips of her jammies, and slips on a dress (usually her Easter dress), some heels, and a crown.  That is how she dresses for the whole day.  If I get her dressed, I turn around at some point and her clothes are off and her dress is back on.  She usually argues about wearing her "princess shirt" to town but so far we have been able to say it's just too cold for that.  She also also perfected the art of rhyming this month.  She loves it!  She'll spend 20 minutes just coming up with random rhymes.  It's also a good "game" for a car ride.  What rhymes with......?

Jaxon slept the whole night for the first time this month.  Not on a regular basis by any means, but slept for a solid 8 hours without waking.  He's 9 months old people.  That means for 9 months I have survived on very little sleep.   I am hoping and praying that this means we are headed in the right direction.  I hear so many people talk about their children sleeping 10 or 11 hours every night.  My kids are just special I guess, because 8 hours is still the most Sierra will sleep at night.  We finally started setting her alarm for 6 am this month.  We told her that when she wakes up she has to wait until her music comes on before she gets out of bed.  So usually she stirs around 5 or 530 and then actually does wait until 6.  We are hoping eventually she'll fall back to sleep waiting to get up, or even better actually sleep till 6.  A parent can dream right?

Jaxon is walking around furniture and toys this month (while holding on), and will walk between things as long as he has one hand holding onto something stable.  He's learned to sit from a standing position.  It's funny to me that they learn to stand first, but it takes a while for them to learn to sit back down.  He generally slowly sticks his bottom out, closes his eyes, and plops down.  He'll also at times drop to his knees.  The boy loves to boogie too!  When the music turns on he'll get onto his hands and knees and rock back and forth over and over again.  He'll sit at the piano with me or my dad for quite a while too.  He loves to pound the keys but watches and will usually gently push some keys with one finger after watching us play. 

Nap times are a fight with him, but once he goes to sleep he usually sleeps well.  He takes a  long morning nap, around 2 hours and then sleeps for about an hour in the afternoon.  Sierra still takes an afternoon nap too.  Unfortunately their pm naps are still generally not synchronized.  Just as I'm getting Jaxon to sleep, Sierra is usually waking up.  It is good to have some alone time with Sierra though.  During Jaxon's morning nap is usually when we'll play outside for a bit, do some crafts, or just be the princesses that we are:)

 I'm constantly feeling like she needs more from me than I can give now.  The first two years of her life, my every thought and action was dedicated to her.  Now I am constantly telling her just a minute while I chase after Jaxon, change his diaper, feed him, or try to get something in the way of housework done.  Jaxon needs me too, but in a different way.  He needs hugged and held and loved.  Sierra needs a response for everything, and my imagination.  These things require more than just a nod, glance, or mmmhmm.  She needs me to be on top of things, and mentally with it.  I feel like I am rarely either one of those these days.  I realize this is the dilemma of any mommy or daddy with more than one child.  I also remind myself that this is preparation for life in the real world.  She is so smart though, and would probably be reading right now if I devoted more time to that kind of thing.  She begs for challenges, but I do what I can - especially with all the twists and turns life has presented us with lately.  Whew.  Someday I will give myself a break.  When I have time for a break:)

Man this post has gotten long!  Praying for NO MORE hospitalizations next month or reasons for Jesse's surgery to be put off.  Also hoping Jess will be home from his surgery in time for Christmas.  We can do this right?



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