September 15, 2008

 

Maybe not the last time - doing medical updates from Jacob's point of view is harder than I thought!  He is still doing amazingly well (almost like it is an answer to prayer.)  He has gained more weight than he is supposed to, so his food intake has been reduced a little.  And we can tell the difference in his behavior.  He is just as polite and fun and all that stuff, he just does it faster with more energy!  Mom and Dad are making progress with encouraging him to eat (he is still on a feeding tube) and he has started drinking from a sippy cup!  They are pretty sure grape juice is his (first) favorite beverage.

 

Heather has been doing what most moms do after surgery - too much.  She is dealing with nausea now, something the doctors told her to expect after donating a kidney.  So, lots (more) of rest for her now as she continues to recover.

 

 

September 10, 2008

 

Okay, one more update here.  Everyone is doing well.  Jacob is up and around and more active than ever.  He even walked on his own, without realizing it.  As soon as he figured it out, he reached for a hand for support.  We think he is getting a better handle on his balance now that he doesn't have the dialysis fluid to deal with.  He is doing so well, in fact, the doctors will be removing the dialysis catheter later this month, much sooner than originally predicted.

 

Heather is doing well also.  She is fully mobile, though slow at times, and is getting a lot of rest. 

 

Jason is glad to have them both out of the hospital (as are we all!)  There are two people to take care of at home now, as well as regular stuff, so he is busy!

 

Signing off, again, for the last time!

 

September 4, 2008

 

At 6:00 am, August 28, 2008, Heather and Jacob checked into The Children's Hospital for kidney donation/transplant surgeries.  At 7:48 pm, September 3, 2008, Jacob arrives home, just 6 days after surgery.  We packed up all his new things, made sure all his medications were ordered and would be ready, put him in street cloths, took on final tour around the floor saying goodbye to the (wonderful) hospital staff.  When he got home and to his room, he simply said 'Jakie's clean bedroom.'  Yes, little boy, you are home and in your own room!

 

Heather is still doing well and is actually behaving herself at home, getting rest as well as moving around to help recovery.  She even behaved when Jacob came in the house - no picking him up for a while longer, but snuggling and cuddling, definitely.  She should recovery from the surgery itself similar to other abdominal surgeries, but recovery from donating a kidney will take longer, perhaps up to 4 to 6 months.  She has an empty spot that needs to heal and her remaining kidney will make the adjustment - it just takes time.

 

Jacob, on the other hand, shows no outward signs of anything happening to him!  All the tubes are gone (the catheter and pic line removal were painful) and the only thing visible is a cotton ball on his neck, soon to come off.  He is 'stepping', standing, sitting, hugging, crawling, scootching, rolling, cuddling and smiling as if absolutely nothing has happened.  Except, for the first time in a long time, there was no dialysis last night.  No masked sterile hook ups, no betadine, no fills, no drains, no alarms, no cc's in/cc's out, no tubes, no drain bags, no... well, you get the idea.  The dialysis machine and table are gone, with only a blood pressure machine left in an otherwise all boy's bedroom.  Though we are pretty sure he spent the night with Momma and Papa, enjoying being together.  There are two things that we notice, though.  He has ENERGY!  All the things he does are done with a lot more energy than before.  The other is when someone comes into the room, he says 'All better, all better.'  That's what he said to the nurses in the hospital when they came in, as if to say please don't do anything to me 'cause I am okay...please?'  Let's hope that part passes and 'All better' soon means 'I AM all better!'

 

Jason is doing well, too.  It's good to have everyone home.

 

This is your cub reporter, signing off at the end of an amazing week.  We now return you to our normal network schedule.

 

 

September 2, 2008  6:00 pm

 

Just a few last things to check and, expecting good results, Jacob comes home tomorrow!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  His blood work is very good, he is 'stepping' and riding the wagon, he is sitting up, he has no more tubes, he is coming home.  The hospital needs to get all his medications together in a coherent schedule because with a transplant comes a medical routine that needs to be fine tuned and followed rigorously.  That is scheduled for tomorrow afternoon and may be the only hold up.  We are not into records, but the only other transplant patient to leave the hospital in less time than Jacob was 12 years old.  We are, definitely, into saying thank you to everyone who helped make Jacob's (and Heather's) recovery so quick.  Jacob is coming home!

 

September 2, 2008  2:00 pm

 

Jacob is now free of any IV/catheter lines!  Everything has been removed except the pic line and occassionally O2 (just tubing.)  He got up to take another wagon ride and really didn't want to walk - until he saw he was standing up to get weighed and then it was 'Step, now, please.'  Then he got his wagon ride and tired out all of his slaves as they dragged him around the surgical floor.  They all said 'Jacob, you look tired and may need a rest.'  Right!  When he got back to bed, he sat up by himself.  Everyone knows that resting is done by laying back, but not Jacob - 'Sit up now' is the order of the day.

 

Jacob will probably come home in the next few days.  We'll find out from the surgeon this afternoon, hopefully.  Home after a transplant in less than seven days - If it was anyone else besides Jacob one would wonder.  The miracle continues.

 

September 1, 2008  10:00 pm

 

Heather is home!  And glad to be there, except that Jacob is still at the hospital.  Checking out of the hospital took a very long time, and lf course it was Labor Day and arranging for precriptions was more difficult than it should have been.  Home, doing well, needs rest, so if she doesn't answer the phone or get back to you right off, please understand.

 

After a pretty rough night (the gas and bowel thing, and him saying 'Fix it, Daddy, please'), Jacob has things moving and apparently quite well.  It is referred to as 'rhino poop', for reasons I won't go into but should be obvious!  He had several wagon rides ('Go fast again' and 'More!') and is moving quite well around the bed.  All the nurses think he is the best - okay, I added that but they all think he is the most polite 3 year old they have had, the most cooperative, the most helpful (for a 3 year old), etc. - I just shortened to the best.  He is still on a very low rate of oxygen, has the IVs out and only has the pic for some blood draws and medication.  He is on regular formula (the feeding tube will be a near term project ot get rid of, that is, teaching Jacob to eat), will be going on a more regular feeding schedule and gets more water now that he has a functioning kidney!  It may not seem like much, but seeing color to his urine was a pretty special sight!

 

We will update pictures soon.

 

September 1, 2008  Noon

 

Too soon for an update?  Not so!  Dr. Ford just came up to visit Jacob (he is the nephrologist who gave us Jacob's initial diagnosis of kidney failure) and told us Jacob is doing well.  In fact, Jacob's creatin level is 0.2!!!!  Heather is in her bed, crying over the good, no, wonderful test results.

 

September 1, 2008  10:00 am

 

There's nothing like spending a holiday in the hospital, especially when it is for a kidney transplant for a little boy!  The epideral itself was taken out yesterday since Jacob was doing really well without it.  He is actually getting Tylenol with Oxycodone for pain.  Unfortunately, it does not help too much with gas and bowels, which are the big issues right now.  Getting back to 'regular' after surgery can be difficult and that's what is going on with him.  However, he got to ride around the floor in a wagon yesterday and actually took a few steps.  He wanted to step more, but it hurt his tummy so it was only a few.  He was supposed to stay here for up to two weeks, but there has been talk of getting him home sooner since he is doing so well!  Don't forget he spent only one night in the PICU!

 

Heather says to tell you 'Momma pooped!'  That wasn't my idea, but the getting back to 'regular' was a big deal for her, too.  She is feeling much better, looks pretty normal, with good color, and is moving around really well.  In fact, she is doing so well she is going home today!  Her attitude remains amazing, both for the recovery process and because of the kidney and how it has changed Jacob's blood chemistry.  For those of you who remember the TV Batman and Robin, 'Holy guacamole, Batman' is right on. 

 

Keep Jason in your thoughts and prayers.  It's been five days of being here with wife and son.  Very tired is probably an understatement - holding on to the end of the rope may be a better description.

 

August 31, 2008  12:00 am

 

Another first or step forward - Jacob's epideral has been turned off.  That's the device that has been Jacob his pain medicaltion.  He is transitioning to Tylenol and, so far, he is doing well on it.  He is taking a nap right now.  He started in a sitting position and now is crosswise on the bed,  He obviously moved himself.  Guess the Tylenol is working okay, at least for now.  He is scheduled to get out of bed today and take a wagon ride around the floor.  We told him Momma has already done 15 laps and he needs to catch up.  He simply said 'Balloons, please.' 

 

Heather is doing okay and still dealing with pain management.  And a lot of the CO2, used to help with the laproscopic portion of the surgery, is still causing some discomfort.  It will eventually go away - it is just no fun until it is gone.  She will probably go home tomorrow or Tuesday at the latest.  She is doing a lot of walking to get better and lose that CO2.

 

Jason is looking forward to the Rocky Mountain Showdown tonight - CU vs CSU.  He is a Buff, but there are a lot of Rams around here.

 

August 30, 2008  8:00 pm

 

The remainder of the day was similar to the morning except everyone (Jason, Heather and Jacob) got a good long nap with much needed rest.  Jacob didn't wake up too well and was very confused about where he was.  What finally calmed him down was watching 'Shrek' for the billionth time.  Then both grammas joined him in a recorder jam session.  Tomorrow, Jacob goes off the epideral with its pain med and goes on liquid Tylenol.  Another sign of progress and we are all hoping Tylenol is good enough.

 

Heather is finally making progress with pain management, getting off everything and only taking Percocet.  Not as fancy as the other medications, but it is working better than anything else.

 

August 30, 2008  1:00 pm

 

It is hard to imagine that only 48 hours ago, Heather and Jacob were in surgery (and we weren't tired!)  Jacob is wearing us out!  I had thought sometime this morning he wold take a nap, but no so - he has too much to do and is stuck in bed so we have to go get stuff he wants.  It is tough duty but someone has to do it!

 

He is doing great.  He keeps reminding us that he is polite, heavy and brave.  He is down to two IVs (he started at six?), well, one pic and one IV.  He doesn't like blowing into the breathing therapy device (to keep his lungs clear) so we have about ten recorders of different colors that kind of do the same thing.  There are times the room is full of music, well, notes of all kinds anyway.  He does have some congestion, which is fairly common after surgery especially when you are in bed and can't get up.  It is slowly getting better and really isn't a problem.  He is never sure of what the nurses are going to do when they come in so he says 'All better' hoping they won't do anything.  Then they ask him if they can take blood pressure and he says 'Please'.  He is polite!

 

Heather is doing well except for the pain management, still.  It seems the good pain stuff doesn't have much effect on her, other than an annoying itch.  It is getting a little better with each nap and meal, and she is able to be up and around.  It is just uncomfortable (sometimes hurts.)  Other than that, she is doing well. 

 

Jason is pretty tired (go figure!), but it is hard for him to take a nap anyway. 

 

August 29, 2008  6:00 pm

 

Jacob is now in his new regular room.  He moved into the room right after a nap and is now running riot in his bed!  His nurse said he is the most polite patient she has had and it has only been 30 minutes.  It is hard to remember that surgery was only yesterday.

 

Heather is still having a hard time with pain.  The last paincontrol effort didn't do much better than the first, although that didn't stop her from going down to see Jacob.  She is 'restricted to her room for rest while a new program is tried.  The good news is that Jacob's room is only two doors down from hers.

 

Jason is doing pretty good now with some rest and some food.  And there have been quite a few friends here to help out.

 

 

August 29, 2008  2:00 pm

 

We are doing Jacob duty now.  We try to have someone with all the time, mostly so he doesn't get lonely (or because we just want to be with him!)  It may be my imagination but he seems to have a lot more energy than ever before.  And this is only the first day after surgery.  He is moving about on his bed very well, hiding under his blankets and telling us to take our glasses of and then put them back on again.  He has balloons (two balloons, please!), puppies and baseballs that are getting thrown onto the floor.  He somethings gets too active and something hurts but the change back to active is quick!  There will be some pictures pretty soon because a lot of the medical paraphenalia is going away.  You'll see some yellow gowns on Jacob's visitors - that's because of concerns about a drug resistant disease and is just a precaution right after surgery.  The gowns will go away, probably tomorrow.

 

Heather is doing okay and is already eating solid food, which should help with the pain control.

 

This transplant is the first living donor transplant at the new Children's Hospital.  Jacob may also set a record for the shortest time in the PICU after a kidney transplant - one day.  It is hard to believe that at this same time yesterday, Heather was in the recovery room and Jacob was on his way out of surgery.

 

August 29, 2008  Noon

 

Grab the tissue and get ready for some good news.

 

Jacob first.  He had a pretty good night and is doing so well, he will be going to a regular room TODAY.  He was supposed to spend 3 - 4 days in the PICU but is doing so well he gets moved today.  His creatin level is 0.4, which is within the range for a person with a healthy kidney, and it will probably go down some more.  He had some restraints on his arms to prevent hi from ripping out themany IVs he had and those are gone now.  So are most of the IVs!  He is back to his normal smiling self, wants to hold hands, wants hugs (not yet because of some surgical requirements), laugh, kick his feet and get more balloons.  He wants to watch the Jungle Book and listen to Move It, which we all know by heart.  He is pretty leary of nurses right now, for good reason, as when they walk in he says 'All better now' before they do anything.  They really have been great - Jacob has just been through a lot.

 

Heather had a pretty rough night, though.  She was able to walk a little, but was in a lot of pain.  Fortunately, the doctors are getting her pain under control and she is doing much better.  In fact, she is downstairs right now for her first visit with Jacob!  There were a few people in his room when she arrived, but when he saw her, all he could do was lift his arms and say 'Momma, Momma, Momma!' with a big smile on his face!

 

August 28, 2008  Late

 

Well, things got a little busy for us after Heather and Jacob got to their rooms – a regular room for Heather and a Pediatric ICU room for Jacob.  Both were doing fine and visiting was the order of the day.

 

When the kidney was placed in Jacob, the doctor said it ‘pinked up’ right away – that is it started working very quickly.  Jacob remained under anesthesia for quite a while.  He regained consciousness about mid-afternoon and was pretty confused and frustrated by his surroundings.  By the evening, he was sort of back to himself.  He smiled occasionally, squeeeeeezzzzed fingers, kicked balloons (a little known non-Olympic sport) and did other Jakie things.  We are pretty sure he was not in much pain as he had an ultrasound of his kidney (we have been working toward saying that for three years!) and he didn’t flinch at all, indicating the pain meds were working.  And his creatin level was 3.5, his lowest value ever and another indication the kidney is working.

 

Heather did very well in the surgery, too.  Her attitude is great and she is very happy to be able to give Jacob a kidney (her almost constant smile confirms this.)  Unfortunately, she is having some trouble with pain management.  The doctors and nurses are working on this and we will let you know how it goes tomorrow.  She should be able to eat light foods then and that should help.  Now, you have to remember this is Children's Hospital - one child going by Heather said 'Mom, that is an awfully big kid!'

 

Jason has had a long day with two important people in his life in surgery and now recovering.  The surgeries were probably the worst part, but then deciding which room to be in presented its own dilemma – they are on different floors, fortunately in the same hospital.

 

Thank you every one for your thoughts, prayers and messages!  As best as we can tell right now, it has been an awesome day, with awesome results and an awesome start to a new chapter in the Bottone family’s life.

 

(p.s., no pictures today – surgical patients do not make good models!)

 

August 28, 2008  12:30 pm

Well, for  being told to expect 7 - 8 hours of surgery, both Heather and Jacob are out of surgery after just 4 hours!!!  Heather is getting ready to be moved to her regular room, with all vital signs good and pain being managed.  Jacob's new kidney is totally connected and he is going into the recovery room.  His next stop is the PICU for a couple of days. 

August 28, 2008  11:30

We just went in to see Heather and she is doing quite well for just coming out of surgery.  She is in some pain, normal for a surgical patient.  Jacob is still doing well with some time to go.

August 28, 2008  10:30

WOW!!!  Heather's surgeon just came out and told us Heather is doing fine and her kidney is actally in Jacob!  She will be in recovery in a few minutes and we should be able to see her in about 1/2 hour.  Jacob is doing really well with the artery attached and being checked out.  The vein and bladder connection are next and should take another 2 hours to finish.  I have to go so we can have a group cry for joy.

August 28, 2008  9:30

Heather and Jacob went into surgery at about 8:15.  They were given anesthegia at the same time and Heather is having her kidney removed, which should take 1 1/2 hours or more.  Her kidney will be 'cleaned up' in preparation for the transplant into Jacob.  Everything started out really well.  Overall, we are expecting a total surgery time of 7 to 8 hours, although it could take up to 11 hours.  We are hoping for 7!

 

This is the page where we will try to keep you up-to-date with Heather's and Jacob's progress through the kidney transfer process and recovery.    The transfer is scheduled for August 28 and will begin early in the morning.  Heather goes into surgery first and when all is good with the kidney, they will start moving the kidney to Jacob.  Total surgical time may be 6 hours or longer.  That is a lot of worry and waiting room time, but we've worked 3 years to get here and we are not turning back!  Please be patient (pun intended) with updates as we may be preoccupied for the first few days after surgery.

 
 
  Site Map