Good Morning,

As you can see, Benjamin is comfortable here at home!  Since we came home Wednesday afternoon, he has done well overall.  He's sleeping and eating fine.  We were able to have the IV line removed before we left as it was determined that the oral antibiotic would be equally effective and he was impressing us with how much he was willing to drink.  All good!

You may notice in the picture that it looks like he's still in a hospital crib.  He is.  This is another recent blessing for us.  I was notified that a local medical company had several hospital cribs that had been donated by Shriners as they were remodeling and purchasing new ones. I called and asked if we could have our name put on one of them.  It is the nicest, newest hospital crib we've ever seen.  For a nominal fee they delivered it and even offered to set it up.  Benjamin was still in a regular crib, but he was going to be too big for it soon.  This crib is much bigger accommodating up to 5 ft and 300 lbs....which in Benjamin's case means it should work for a very long time! I've found his 2 oldest sisters in there at different times already, just relaxing :o) Guess there's something cozy about it :o)

I'm quickly recovering from my sleep debt...Larry was off the first 2 nights we were home, so that was so nice.  I had to get up early yesterday morning for a dental appt (extraction).  Not my favorite way to start the day.  Thankfully, even though I was very nervous at the time, it's been minimally painful and I don't think there's any swelling.  I hope it will all heal up fine.  I had broken a tooth near the gum line, so that was why it had to go.  Thankfully it was towards the back.  They offered an implant ($3000 co-pay) or a little fake tooth that clips to the one in front and behind ($30 co-pay).  I had to contemplate that for about 2 seconds.  It was custom made and ready yesterday, so that went right in...it's comfortable and not noticable, so I'm good to go with it I think.  I have so much dental appt. anxiety, I am very glad to have this experience behind me.

Have a wonderful weekend.  Thank you again for praying us thru this recent serious illness for Benjamin.  We're enjoying meals you provided and the practical ways you came alongside of us during this time.

Love, Janelle & all

Good Morning...It sounds like they are really going to let us go home today!  I'm so excited, especially for Benjamin who is very ready to be able to get down and walk and play (I won't let him on the floor up here!)  

Check out this video...I tried to put it on here last night, but I was unsuccessful.  Krissy got to go up to Sandy HS on Monday afternoon.  The music teacher let her play the drums and this is her after about 10 minutes.  She just looks so comfortable doing it doesn't she?

http://www.youtube.com/watch?v=OfeUjUv_U0s

Thanks for all your prayers this past week+...we now pray for the transition home and a season of good health for our little guy.

Warmly, Janelle

So much better

Hi again~Good news to report!  Benjamin just keeps getting better.  Yesterday I unhooked his oxygen hose to change his shirt and thought it might be interesting to see how he did off of it.  It wasn't like he was going to stop breathing...I just didn't know if his levels would begin to drop.  But they didn't!  I was quite sure he'd need it again overnight, and he has never needed it since.   This is evidence that the fluid has come out of his lungs.  I'll tell you, we've gone thru a number of packages of diapers...they gave him something to get rid of all this IV fluid they loaded him up with in the ICU. Just yesterday his wet diapers accounted for 3 liters alone.   He's gone from looking deceptively plump to seeing how thin he really is.

But today, we started him back on oral feeding...very diluted formula at first, but now he's up to 1/2 strength and is tolerating it fine.  I've asked to go home tomorrow.  The older surgeon we have is super conservative and my take is that if he thinks this was my idea, he won't like it.  We can do IV antibiotics at home as well as overnight fluids if he needs them, so a number of the staff is cheering us on.  I'll let you know what happens.  

We both had some good sleep last night thanks to IV Benadryl (Ben) and utter exhaustion (Mom), but seriously it was a real answer to your prayers.  I could use another one like it.  
It would be wonderful to have an uneventful night and continue a smooth transition to home tomorrow.   Let's pray to that end if God wills.

Love Janelle

Making progress...

We moved Benjamin about 6 pm last evening and he's continuing to progress...slowly, but heading the right direction.  He is still 'imbalanced' in terms of his electrolytes and fluid load...but we were happy to ditch the urinary catheter and the nose hose both before leaving ICU.

As you can see, he's sitting up and sort of goes between playing with some things in the crib, sitting in his stroller and sleeping.  He's really enjoyed the little personal DVD player that Child Life loaned to him. He's finding his familiar videos enjoyable in a new way, just 3 inches from his face.  

Larry traded places with me last night and I was brave enough to go home and sleep.  It was great.  David listened overnight for Kristin (on the monitor) so I didn't have anything  I needed to worry about, and I really slept deeply.  When I checked in with Larry early this morning, he said that they had also had a good night here.  I drove up about 9am and arrived with the surgeons outside his door, so that timing worked out well.  With Benjamin out of ICU, we no longer had pediatricians assigned to him, so I requested that. I think the surgeons are quite happy to do it all, but I'm more comfortable having others involved and particularly find the pediatricians are such great communicators and glad to talk over my concerns if I have them.

Thanks for your prayers 

Ease on down the road...or at least up the elevator

Good Morning,

It's a happy one here in Benjamin's room with a unanimous vote that he is ready to move from the ICU up to the step-down unit today.  He's looking a little more alert and even getting a little antsy with having to be either in his crib or stroller.  

I just heard that the nasal gastric tube (that uncomfortable nose hose) gets to go today too.  His IV nutrition was started last night, so there is no pressure for him to eat...he'll be able to just start slow when he gets ready and we'll know that he's now getting all the nutrition he needs while his system recovers.  

It was great to have our friends Steve & Michelle visit last evening.  While there haven't been smiles this week, we saw that little spark of recognition in Benjamin's eyes when he saw them. Steve hung out with Benjamin while Michelle and I went to our favorite Thai restaurant and picked up a wonderful take out meal that we brought back and enjoyed together.  Thanks for the treat you guys!

Jamie  spent the last couple of nights here with me...she and I found out we can both sleep on this 'meant for one' bed if we have to.  I was a bit restless, knowing I needed to stay tuned in to Benjamin and in ICU there is just always so much going on around the clock. 

Keep praying....We're thankful for how well he's doing.  Love, Janelle

Thankful

Today I'm thankful...

• Benjamin is showing steady improvement
• Although we have to stay in ICU one more day, it sounds like we really are going to get to move upstairs tomorrow
• for Larry who drove up here late last night and sat up with Benjamin who was restless, so I could have a few good hours of sleep
• for people who have stepped in and helped us this week, covering my responsibility for the carpool I never helped with for Jamie's CYT camp
• for my wonderful friends and family who send me notes of encouragement, offers of help and show up with bags of survival food and drink from Starbucks
• for our older kids who have all helped us out thru this
• for friends like Susan who always makes us her priority when we're in the hospital, bringing blankets, games and food to make things easier
• for the anticipation of Steve & Michelle's visit tonight and how happy that will make Benjamin (if Steve brings his guitar, it will be the icing on the cake!)
• for the cool comfort of this room we're in, while all of you are sweating it out in our heatwave here...did you draw the short straw or what???? :o)
• for Krissy having a great first day of summer school yesterday and for those who are helping her have a happy summer 
• for my mama who thinks to cut up cantaloupe and send it up to me and is always available to help out whenever/wherever

Hoping you have a good day and even if it's not what you hoped for, you can still count your blessings~ Love Janelle

ICU Day 3

Hello, 

Thank you for your prayers for Benjamin.  He is hardly recognizable with probably 6 or 7 lbs of excess fluid swelling him up, but it really seems that he's turned the corner.  He was on 12 liters of 100% oxygen during the night, now down to 5.  As you can see in the photo, he's still attached to way too many machines, but we're thankful to be in a place where these interventions are available.  Yesterday he developed a pleural effusion (fluid in his right lung) that interfered with his ability to oxygenate as well as he needed to.  They've told me that it's possible that he would need to be intubated but we're all hoping that won't be necessary.  Things are looking increasingly favorable several hours into the day.  We put him in his stroller just to have a change in position that would facilitate him breathing without so much work.  He's almost constantly sleeping, but that's a relief right now for all of us.  If he really turns around on this whole respiratory issue, we can potentially be transferred before long to the general pediatric floor for the duration of our stay.  I don't have any idea now how long we're looking at...we can do the IV antibiotics easily at home.  If he needs to begin eating (??tomorrow possibly) and build up that will take 2 or 3 days.  They are talking about starting IV nutrition too, so again, that could go home with us.  I need to not jump ahead, but just be thankful that he's better than yesterday and pray that God will continue to carry us thru the days ahead.  

I was telling Larry this morning how much I've appreciated our older kids thru this.  They have all been stretched in taking on added responsibility and it's been done willingly and without complaining and really understanding the seriousness of the situation.  Sometimes we hear about how self-absorbed the teen years are...I certainly had those moments I'm sure...but it's just been a gift this week to not have the stress of trying to make the kids get it.  They just have done whatever needs doing, even in the middle of the night.  Thanks Lord for encouraging us in this way...

High maintenance boy

Benjamin has picked up a lot of technology over the past 18 hrs.  He is hooked up or attached to so many things...he's got a PICC line (central IV line that goes from his upper arm to his heart), a foley cathether :o(, a nose tube, oxygen and 5 IV pumps at last count.  

I wish we knew what was going on with him.  Over the years, we've learned that when we hear "this is probably a virus" the translation is "we have no idea what's wrong".  As Anne said, "If this is a virus, I sure hope we don't all get it." Thankfully we got the surgeon back this morning that I have more confidence in than the guy last night who, over the years has consistently preferred to have his head in the sand.  His closing remark to me in answer to  my asking him some questions to try and make sense of it was "You can just let us worry about some of this stuff."  Grrrr.  Thems fighting words to a mama with 41 hrs since I last had sleep. Thankfully I heeded the still small voice to not verbalize further thoughts...  

Anne has been a real support to me here.  She ordered me to bed late last night (there's one right in the room) and said she would call me if anything came up.  I found out at 6am that she stayed awake all night beside his crib.  Her words "how could I tell you if anything happened if I was asleep?"  I sure appreciate her.  She's crashed now on the bed.  We've had about a dozen MD's thru this am already.  Just heard that his lab work for c.difficile toxin came back positive...a bacterial infection in the bowel...so at least we know part of what we're dealing with. He had this one other time when he was about 2 yrs. old.  They did say that he would not be moved from ICU today as he is requiring alot of care and interventions...more than they are prepared to deal with on the general pediatric floor.  

Thanks for keeping Benjamin in your prayers.  We're thankful to be in good hands here, but mostly thankful that we can rest with confidence in the hands of God.

Love, Janelle

Well...I sure haven't been very good about keeping up on news. Benjamin did well following surgery but his incision didn't hold together. That happened on the Sunday after surgery, so on Monday I took him in to the surgeons and they had a look. He also began a course of antibiotics and has done pretty well the last week.
Until yesterday....I could just tell he was 'off' yesterday morning. He was playing some, but seemed uncomfortable in a vague sort of way. By mid-afternoon he was asleep in the entryway and by 5 or so, he started vomiting. We felt so sorry for him, but couldn't land on anything that seemed to be the problem for sure. Larry went to work about 10:15 and I was contemplating sleeping on the sofa next to Benjamin's crib in the family room. But he was retching so frequently by about 1am, I thought "this isn't going to work". Anne helped me think thru the best strategy for dealing with this drama...Jamie had to be at Central Bible for a CYT carpool by 7:30 am (she's a counselor for them this summer). Anne suggested they take Krissy with them to drop Jamie off, and then Anne would come along to help me. I wasn't relishing trying to drive and 'be there' for Benjamin at the same time. So that's what we all did and it worked!
The ER staff was very responsive, probably moreso because Benjamin wasn't. He was really lethargic and seemed to repeatedly forget to breathe regularly. The xray showed a bowel obstruction and his tummy was getting visibly bigger. He was admitted to the Pediatric ICU just before 6am, so that's where we are. I can barely keep my eyes from crossing...just not used to 32 hr. blocks with no sleep. He had a number of random abnormal labs too, many of them due to his significant dehydration. We don't know why, but he had a fasting blood sugar of nearly 200, unheard of for him. The surgeon came and said if things were still significantly off with the mid-day lab results, he would take him for exploratory surgery this afternoon. Thankfully the xray looked a little better, things seem to be working AND his lab work seemed to be improving as well. They are still working up the apnea spells and now, also the fever that he's developed. He's on 2 IV antibiotics and the reason I'm out at the computer is that the IV team is putting in a PICC line. Thanks for your prayers. I'll try and update in the morning...I would expect we will be in the PICU for another day anyway. He's pretty lethargic, although less apnea spells this afternoon.
Love, janelle