March 12, 2010

 

This past Tuesday night, Jacob underwent surgery for an obstructed small intestine.  He had been having trouble for about four months, but it was always diagnosed as gas or a reaction to a virus or trouble with his food. 

 

The problem came to a head Tuesday morning when Jacob woke up with his stomach severely distended and in a lot of pain.  Jason and Heather called the doctor's office and were told to immediately go the emergency room at Children’s Hospital.  After an x-ray and a CT scan, the doctors determined his small intestine was completely blocked and they scheduled emergency surgery that night.  The surgery started at 10 and lasted until just after midnight.  The blockage was caused by scar tissue caused by his PD catheter, which was removed about a year ago..  Because the diagnosis was so late, Jacob also had a hernia that needed surgical repair and he has pneumonia.  We have been told by several people that Jacob’s condition was very serious and it was a good thing he got to the hospital when he did.

 

The surgery went well.  Jacob was placed in a regular room at the hospital and all the staff tending to him have been great.  One of the nurses took care of Heather during the kidney transplant.  Reunions are great, just not a hospital!

 

IMG00027We haven’t put too many pictures of Jacob in the hospital in here, but this seems to be the time.

 

His incision goes from his belly button to his rib cage and he is on pretty heavy pain management.  At first he was doing quite well with the whole thing and the pneumonia was just in a small portion of one lung.  However, the pneumonia has progressed to both lungs.  His blood oxygen level is in the 80’s (above 90 is most desirable), even with oxygen.  The little lion in the picture is actually camouflaging an oxygen tube that is blowing extra oxygen into his face.  Those nurses can be quite clever!

 

Even with two sources of oxygen, it still wasn’t enough.  He is now on a full face mask, something he really hates.  He may go into intensive care (ICU) as a precaution in case he needs to be incubated.

 

That’s where we are right now.  Please be praying for Jacob, his Momma and Poppa, and for all the medical staff taking care of Jacob.

 

 

March 13, 2010

 

A lot of things have changed since yesterday.  Jacob is dealing with two separate conditions so you are going to get two long stories.

 

First is the surgery to fix the blocked small intestine.  This was the surgery on Tuesday night that fixed the blocked intestine and repaired the hernia and nissan.  (The nissan is a device that was put in his esophagus when he went from a nasal feeding tube to a gastronomic feeding tube (g-tube).  The nissan stops things from coming back up from his stomach, like spit-ups, burps, gas and such things normal to most kids.  He was on a strict diet and this was essential.   However, when his intestines were blocked, this caused a blockage on the ‘other end’, so gas and food had no where to go and his stomach distended.)  The surgery was successful and Jacob is doing well from that perspective.  The scar tissue (adhesions) has been removed, the hernia repaired and the nissan, which had been forced up into his esophagus, was put back in place.  All indications are that the distended stomach and intestines are returning to normal.  What also happened is the intestines below the blockage were starved and shrunk – they appear to be returning to normal, too.  Jacob actually had a ‘poop’ yesterday, a very good sign that things are getting back to normal.  Well, normal for Jakie – it is not normal for grown adults to jump up and down and celebrate **** (the **** really means poop, really) in a diaper!

 

Second is the pneumonia.  That has gone from a small area in one lung to a full blown case in both lungs, with a temperature of 102 F.  Jacob has progressed from needing the nasal tube for oxygen to an additional hose, to a full face mask, to a ci-pap, to a bi-pap and finally to a breathing tube and ventilator.  This was a pretty difficult progression to go through since he was struggling to breathe at each step, when each step was supposed to make things easier for him.  The last step (called intubation) required surgery last night and the doctors also installed a pic-line, a very effective type of IV.  He now has a breathing tube and his breathing is being assisted by a ventilator.  He is being sedated while he is on the breathing tube to keep him quiet and so that he won’t remember this part of his treatment (how would you like a big tube stuck down your throat?)  This will also give him rest from the labored breathing he was having – rest for his lungs, rest for his heart, rest for his body.  The bottom line is he is resting and breathing easy, which is right where he needs to be.

 

He also received a transfusion of blood.  In Jacob’s case, this would be called legal blood doping – the extra red blood cells will help him absorb oxygen and get it to the rest of his body.

 

Jacob did wake up shortly, which we were told could happen.  Before he went back to sleep, he said ‘Sit on couch, please?’  Nobody did what he asked but it was good to hear him tell us what to do.

 

On a personal note: I was leaving Jacob's room Thursday night and had my jacket on to go.  He looked at me and said 'Stay here.'  'You want me to stay here?'  He replied 'Stay here, please.'  Of course I stayed, with a melted heart.

 

Jason and Heather are taking very good care of Jacob (some people ask them if they work at the hospital!), but are having a very rough go of it.  They aren’t getting a whole lot of sleep and are obviously very worried.  So, thank you for all your messages, prayers, balloons and love for this little boy.  Please keep them all in your prayers.  Oh yeah, remember the medical staff, too, we want them doing the best they can.

 

 

March 14, 2010

 

The surgery part of Jacob’s care is still going very well.  He is no longer on dilaudid (a very strong pain medication) and the epidural was removed today.  His only pain medication is Tylenol, so pain management is becoming much easier.  The Tylenol was in a suppository form but Jacob ‘gave it back to the nurse’ several times so they switched to a liquid!  He has been on IV solutions since his surgery, with no feeding, so his insides can return to normal.  Today he was fed for the first time, and, at least in the beginning, he was tolerating it well.  He is only getting about 1 ½ ounces per hour so they don’t overwhelm his system with food and fluid.  And, yes, the adults are still celebrating poop and gas as it means his system is beginning to function.  We can also report his kidney has remained strong through the ordeal, a very good sign indeed.

 

His pneumonia condition is now heading in the right direction!  His fever broke last night and is down from 102+ F to almost normal!  His breathing is much more relaxed and easy, and his color is a lot better.  He is still on antibiotics (four of them if we counted right) and is still sedated as he is still intubated and on the ventilator.  However, the oxygen setting is at its’ lowest setting.  He may come off the ventilator this evening or tomorrow – we think tomorrow will be the time, just from a precaution standpoint.  When he comes off the ventilator (it is called extubation when the tube is removed), he will no longer need sedation and can get back to telling us what he wants us to do.  Then it looks like another day or two in the pediatric ICU and probably on to a regular room for a few more days.

 

Jason and Heather are actually doing quite well.  They have been able to get some rest the past few nights and been able to get out and walk around.  They have also been able to help each other get through their own difficult times.  Heather sort of invited herself in to a meeting between medical staff and an organization called Donate Life (www.donatelife.net), obviously promoting organ donation.  When they found out she was an organ donor, they asked her to speak to the group, which was a surprise to her!  She said there were more than a few teary eyes in the room as she told her family's story.  Heck, we still get teared up ourselves!

 

Thank you all for your thoughts, prayers and support.

 

 

March 14 (late night)

 

Jacob is still doing quite well with the feeding regimen he is now on - really slow feeding through his g-tube.

 

 

March 15, 2010

 

The surgical part of Jacob’s recovery is still going well.  He has been getting small amounts of food and handling it.  Everything is measured, in and out, so they make sure there is a balance.  They want to make sure there is no build up of fluids in his system that is still recovering from being distended. 

 

Jacob took a big step with the pneumonia today.  He passed his ‘oxygen test’ – the doctors took him off oxygen for a while to see if he could maintain a good blood oxygen level on his own.  He could!  So, today, he came off the ventilator, had the urinary catheter removed and had all but one of the IVs removed.  Both arms are free of tubes!  And, quite literally, both arms are free.  His arms have been in restraints for the past three days while he was sedated – kids very often will rip out the IVs or the breathing tubes which obviously is a very bad thing.  He is back to the small face mask to get oxygen from a bi-pap oxygen supply.  He still doesn’t like the mask, but in comparison to what he was doing earlier, he is happier now. 

 

GetAttachmentHe was rather restless after all this activity – it took the nurses almost two hours to get everything done and what they had to do was very unpleasant for Jacob.  For the first time in four days he could squirm around to get himself comfortable!  This little trooper is amazing.  With all he has been through…, well, this picture says it all.  We have some photos of him with the breathing tube and everything else, but we don’t post those.  If you want to see the photos, e-mail grampa and you will get a few.

 

So, Jacob is getting ready to leave ICU either tomorrow or Wednesday.  He will go back to a regular room for a few days.  He still needs to be monitored for feeding progress, making sure the distention is healed, and that he is getting over the pneumonia, but we think the real reason is because the nurses don’t want to see him leave yet!  If you want to send cards or, more importantly, mylar balloons, e-mail grampa for details.

 

 

March 19, 2010 

Jacob is in a regular room now!  He actually left the ICU early Wednesday morning (like when it was dark!) because they needed room for some other kids.  He was doing just fine with all his meds and the oxygen, so off he went.  He is still in ‘isolation’ because of the pneumonia, which is clearing up, so if you visit you will need to suit up.  That means a gown, a mask and gloves if you go into his room.  We are expecting the ‘isolation’ designation to go away soon.  If you visit, please remember Jacob has been through a lot and gets tired quickly. 

GetAttachment1Poppa and Momma were going to get Jacob up for a walk yesterday when all the tubes (he is down to his feeding tube and the pic-line so ‘all’ is not as many as they were before) were finished since he hasn’t been out of bed since last Tuesday (10 days!).  I expect he will be quite wobbly.  

So, food intake is getting back to normal, he has been on his own for oxygen for extended periods of time, he is smiling again and he is pretty clear how he feels when you talk to him.  Everyone is hoping to go home soon.  In case you are wondering what he is doing in the picture, this is just before he left ICU to go to a regular room and he he is sucking on some ice wrapped up in a (clean) diaper. 

His classmates all miss him and there are more than a few class-made cards in his room, including a 2’ x 3’ orange poster with everyone’s signature on it.  Imagine all the signatures of five year olds on one poster – they did get creative.  One of his best friends was afraid Jacob was going to die, so a school counselor took time to talk to him, explain what was happening to Jacob and that he would be back in class soon.  Jacob’s friend than ‘reported’ to the class what was going on and apparently everyone were very relieved.  Kids are amazing. 

This has been difficult on everybody and we will continue to say thank you for all of your prayers, thoughts and support.

March 20, 2010

A morning update for Jacob - he is no longer in isolation!  He is free to roam the hospital halls and suiting up to be in is room is no longer required.  It appears he will be there for a few more days.  All the medication he received has unbalanced his blood chemistry so that needs to be corrected.  The doctors also want to make sure all of his internal organs have recovered before he leaves.  Good bowel action and all that is needed so Jacob can return to his normal food intake.

March 21, 2010

Well, after things have gone so well after leaving ICU, Jacob has hit a roadblock.  Although he is still doing very well with the surgery and pneumonia, he is not able to take in the amount of food he needs.  He is getting about a third of what he needs.  He is getting his food very slowly (remember he is still on a feeding tube) and after three hours of feeding of what he usually gets in 5 minutes, he doubles over in pain.  The feed stops but he is way short on volume and nutrition.  Right now, no one knows why but they are working on it.  His nutritionist will be in tomorrow which will be a big help.  For now, the plan is to feed him at the low rate for 2 to 2 1/2 hours and stop - give him a short rest and do it again.  He seems to be digesting what he takes in and the goes out parts are working well, too.

GetAttachment2When you look at him, who would think there was another problem.  He had a visit from Chester (a chocolate lab) yesterday and loved it.  The PR people at the hospital came by for a photo shoot with him for their annual report.  And we played some kind of bumble bee game - all he could say was 'Whoooaaa!!' and 'Did you see THAT?!'  He is pretty much ready to come home, except for this eating thing.  Poppa and Momma are ready to go home, too.
 
We are hopeful of some simple answers, but right now we are a bit overwhelmed.  It feels like we have gone from dry land back into the middle of the swamp we just left.   Hmmm, not many swamps in Colorado.  I'll be working on a better description.

Thanks for your continued prayers.   

March 23, 2010

 

Unfortunately, the road block remains.  Jacob still cannot tolerate the volume of food he needs.  To add to the issues, he is not clearing his bladder (medical talk for he isn’t peeing.)  His kidney is working fine, his bladder fills up like it is supposed to, but that is all.  He had a catheter put in so he is okay for now.  He is still on a combination of regular food and the IV.

 

GetAttachment3Jacob and family spent a long time in radiology today.  They were doing the contrast study, you know, ingest the chalk gunk, wait for it to get into your system and then take x-rays.  While I don’t have all the details, it doesn’t look like there is another blockage in his system.  This is good news as it means no surgery now, but it doesn’t get us closer to an answer.  Jacob is back in his room and the last word was he was resting comfortably.  Much of the time he is okay – playing and laughing or sleeping.  The picture is in the radiology room – he is thinking how to color the picture on the clip board!

 

Momma is at home getting some much needed rest.  Poppa is with Jacob after getting some much needed rest at home, too.  Basically, we are frustrated and tired of seeing this little boy go through all this… stuff.

 

For those of you not in Denver, we are having a nasty spring snow storm.  Probably going to get over a foot of wet, heavy snow.  No one going anywhere real soon.  Did I mention we don’t have power and the battery is fading fast?  Nothing like piling on.

 

We are still counting on your prayers and support.  Thanks for hanging in there with us.

 

March 28, 2010

 

Things have been pretty unsettled for a few days, but Jacob is getting better.  Everyone is pretty sure that Jacob's stomach is not tolerating the food because of the trauma it underwent during the initial blockage (the one the surgery was for.)  His tummy needs rest.  So, his feeding tube has been re-arranged to get food dirctly into his intestines.  That was actually a pretty simple procedure and it seems to be working.  He is getting enough food so he doesn't need the IV nutrition anymore.

 

So, the catheter is gone, the pic-line is gone, the pneumonia is gone and this afternoon Jacob will be gone!  They are going home!  He still needs to get better as far as his stomach is concerned and that will take a little time.  Hopefully, in about two weeks, he can get back to meals to his stomach and finally get this over with.

 

He was up a lot yesterday.  He was visiting friends he has made in the hospital.  We played air hockey in the activity room at the hospital and he is demanding to show Poppa how to play, also!  We played soccer in the halls, in his room and anywhere else the balls went.  A little girl leaving the hospital yesterday gave him a small teddy bear because he was staying for another night.

 

I am not sure how people get through this kind of stuff without friends, family and God.  I am glad I don't have to find out - thank you all so very much for keeping Jacob and family in your prayers.

 

March 30, 2010

 

Everyone is glad to be home!  Jacob is doing well and Momma and Poppa are trying to recover from all the time in the hospital.

 

Jacob is still healing from the initial intestinal blockage - his stomach needs to rest and recover before he can back on a regular feeding schedule.  The biggest issue is resting his stomach means he can't store food there, so he gets fed about 16 hours a day.  That can be a pretty short leash (feeding tubes aren't all that ling!), but the kids are trying to figure out how to get the feeding done and still have some mobility for Jacob.  The latest idea is a backpack carrying all the paraphanalia while feeding him.  We will see how well it works.

 

Jacob had to go to the kidney center for some routine blood work.  When they got to the hospital, he said 'Don't want to stay.'  When he was told it was just for blood, his response was 'Finger prick okay.'

 

April 8, 2010

 

There is actually not too much change in Jacob’s condition – he is home and doing well.  He is back to his old self (can you say that about a 4 ½ year old?) and back in school.  He is still not there every day because of doctor visits, though.  His first day back was rather special.  He was hanging his coat in the hall and one of the girls saw him.  ‘Jacob’s here!’  Heather said she heard all the toys hit the floor at once as the kids came rushing out into the hall.  They were all clapping and saying hi and jumping around.  But, the kids aren’t supposed to be in the hall without their parents so the teachers were trying desperately to get them back inside the room.  You can imagine what that was like!  He had to wash his hands and all the kids were trying to help – get him water, get some soap, where’s the towel?  Jacob’s back!  Heather said it was quite special.

 

chumsHere is Jacob with his friend William, back at school, talking things over like nothing has happened. 

 

Jacob is still getting fed at a low rate, still bypassing his tummy – 18 hours a day.  It seems like he is actually processing water he drinks so his tummy is getting better.  It is grumbling a little, too, which is a good sign that his stomach is recovering from the trauma.  It appears the doctors were right about giving his stomach a rest.

 

Maybe prayer helped a lot, too.  Ya think!?

 

We are going to return you to the regular updates for Jacob on the News About Me page.  For you older folks, the Outer Limits is returning control of your tv – seems appropriate to me ‘cause we feel like we were beyond our limit more than once.  Thank you for being there for Jacob’s family, even though some are far away.

 

 
 
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