October 10, 2009

Voice from the Past…

Posted in Health, Hospital Life, Itty Bitty Baby News, Transplantation at 10:03 pm by bk2nocal

I realized that I have been derelict in posting here…so, I wanted to catch up a bit.  But, my mom went into the hospital today for high potassium levels and erratic pulse and EKG, so I’m going to post my last carepages update here at this blog…this is from September 29.  M has since not only got out of the hospital, but we were officially “discharged” from LCPH and the RMH this past week.  We are still moving stuff out of the RMH, but will hopefully complete that process tomorrow and be living with my sister in Davis until we find a place to live.  The title of this Carepages post was “The Year of Living Fearfully”:

That is what I feel like we’re doing right now – having the year of living fearfully. Everything tends to be scary when you’re unsure if your daughter is in rejection or not in rejection, getting some illness due to immunosuppression or not getting some illness due to immunosuppression, at the right level of medications or not at the right level of medications. There are so many “what if’s” running around your head all the time that when something goes wrong, it can feel like the whole world is coming down on you. That is what happened early on Sunday morning…just so you don’t have to live fearfully until I finish telling the story – all is fine now with Mackenzie…

On Saturday, Jason brought Mackenzie to my sister’s in Davis to visit since I had been sick in Chico the entire week before that. I drove down and we were going to stay the weekend there and then go our separate ways for another week of work. But, Mackenzie had other ideas. She was a little fussy all Saturday night, restless instead of restful sleep, a little warm (but it was hot in Davis that day/night), etc. At 4 a.m. she woke up for a third time, I fed her a little and she remained fussy, and then she threw up all over (a relatively rare occurrence now that she has a new heart). We took her temp and it was 101.7, so we called Stanford and they said to drive her in to the Emergency Room there and they would check her out. So, we left my sister’s and drove the hour and a half or so to Stanford. Mackenzie slept most of the way, but the one time she woke up, she dry heaved/spit up a little and seemed to be in labored breathing afterwards. It was pretty scary, but luckily, we were within 20 minutes of Stanford when that happened. I think both Jason and I were in full panic mode by this time, and our hearts dropped when the labored breathing started.

We got her to the Emergency room and the cardiologists on call (Drs. Lewis and Hollander – both of whom we know quite well after being in the hospital for so long) came in almost immediately, said she looked pretty good and they would start running tests on her. The fact they said she looked pretty good just goes to show how much we have come to expect Mackenzie to be healthy already! To us, she looked horrible! I guess this is a good thing though! We don’t think back to what she looked like before the operation…they both said “Wow, she has gotten so big – she looks like a baby now! Good color!” They began drawing blood, etc. and put her on the machines to track her vitals.

We were in the Emergency room that day for about seven hours waiting for a room on the third floor to open up. They swabbed her for flu/respiratory virus, tested her line for infection, etc., etc. They finally gave her Tylenol (I think this was just a mistake on their part – they may have thought we had given her Tylenol before we left home) when her temp hit 103 and within 30 minutes, she seemed to be feeling better, her temp was going down, etc. So, lesson learned…we need to have some Tylenol at home to give her when she runs a fever.

They did an EKG and when we finally got a room on the third floor, Dr. Hollander did an echo and all looked good with her heart. They think it was just a “normal baby-thing – they get temperatures or stomach bugs every once in a while,” but with a heart baby, everything normal becomes a huge scare! Hence, our year of living fearfully. I am hoping that after a year, this fear will somewhat subside. I think its made worse right now by the fact that we don’t know where Mackenzie is rejection-wise right now. It will either be made better or worse by the results we get this week. It is good that her heart seems to be functioning fine, but its still a constant worry that she could be in rejection and not show any real symptoms.

Mackenzie should be getting out of the hospital today as long her cultures from her line come back as clean. It seems that this was just a normal, baby thing and we should not be overly concerned. She will still get her biopsy on Thursday and we will know where she is rejection-wise on Friday and we will either be settling in for a longer stay at the Ronald McDonald House and figuring out how to deal with the rejection OR (and this is the one we’re hoping for), packing to move out of the RMH and quickly finding a place in Chico to move into! Either way, it will be nice to know.


August 7, 2009

I hate rejection…

Posted in Gift Ideas, Health, Itty Bitty Baby News, Transplantation at 12:07 pm by bk2nocal

For a whole new reason now that I have a daughter with a transplant.  The biopsy came back with moderate to high rejection (Level 3, I believe), which put M back in the hospital for three days for infusions of a steroid.  If it were not for the biopsy, we would never know that she is in such high stages of rejection.  She is doing great outwardly.  Good vitals, good tolerance of feeds, and she has even started to take more from the bottle.  But, inside, her body is fighting off her new heart as a foreign invader.  This means that she will have to have another biopsy sooner than planned.  It will be scheduled for a week from this coming Tuesday, so about two weeks earlier than originally planned.

This level of rejection doesn’t seem all that uncommon and most of the people I have talked to have said that after these infusions of steroids, the numbers start to go down immediately.  According to statistics in our heart transplant manual and The Experience Journal from Children’s Hospital Boston, nearly every transplant patient has at least one period of rejection usually in the first year.   Hopefully this will be what she needs and the next biopsy will show better numbers.  I’m just thankful all her function and vital signs, etc.  look good.  So, she at least doesn’t feel bad even though she is going through rejection…

It is a somewhat stressful process…this not knowing.  The doctor said they are currently testing out ways of checking for rejection that will not require biopsies, but none are far enough along to be expected for a few more years.  But, he said that by the time she is a teenager, we hopefully won’t have to go through this.  Medicine is advancing all the time, and we are already so lucky to be doing this now instead of many years ago when they didn’t know as much and weren’t able to solve the problems as quickly and as easily as they can now.

We should get out of the hospital today and get to return to the Ronald McDonald house.  We are currently just waiting for her to have her echocardiogram done once again and the orders written for release.  Thank goodness!

The other area of stress right now is worrying about infection.  I am ordering signs for her car seat, stroller and crib that say “Please wash your hands before touching mine”.  They are available from My Tiny Hands.  (As a sidenote, these also make great gifts for parents of preemies as they are so prone to illnesses in their first few months of life.)  I also carry around Purell everywhere I go.  I may write in on the signs that she has had a transplant – just to make sure that people know its not just some paranoid germaphobe thing (I think a lot of people think that those signs are just suggestions, not requirements) but an actual health threat.  I’m sure people are put off by it at times too.  I know prior to this experience I may have been prone to some eyerolling based on these signs, but now I really understand the importance of them!  Never assume that its just overprotective parents…

Well, still waiting for the echocardiogram…and then to the RMH if all looks okay!

August 4, 2009

Biopsy #1 Done…Results Tomorrow!

Posted in Itty Bitty Baby News, Transplantation at 11:18 pm by bk2nocal

Today was M’s first biopsy post-transplant.  Older kids would have had three by now, but because M’s veins are smaller and more difficult to navigate, they only do them once a month instead of once a week.  All signs are positive at this point.  The biopsy showed good heart function and while they were there, they checked the arterial walls to get a baseline.  I guess that hardening of the arteries is a problem for many transplant recipients.  Having a baseline allows them to track Mackenzie’s arteries and start her on a drug regimen if her arteries start to show signs of hardening.  This approach has been successful, so I’m glad they have the baseline now.

They also made a few changes to her drug regimen.  They went up on her cyclosporin a slight bit because her readings are still slightly below where they want them to be.  They went down on her prednisone slightly – she is on a long wean from it.  She is still on her methadone wean as well, but will be done with that in another week.

She is eating a lot – 100 ml at a feed, but only taking about 20-40 ml from the bottle.  The rest has to go through her NG tube through a pump.  We are going to call Occupational Therapy tomorrow to make an appointment with them to work on her feeding issues.  I feel like she will be good once we move to solids because she really chews on the nipple more than she sucks on it, but who knows?  I am hoping OT can give us some ideas on how to improve it as putting the formula through the pump is time consuming, but for now, we’ll take it.

She has not gained any weight since she got out of the hospital, which is a bit disappointing as well.  But, I am hoping that upping her feeds to 100 ml from 70-80 ml and the increase in the calorie load in the formula from 24 to 26 calorie will make this week a big week for her growth-wise.  She is so skinny and little still, its a bit disconcerting when we think about how old she is.  I don’t really think about it much until I see another baby that is younger than her, but seems so much bigger than she is!  I figure she will probably always be a bit on the small size, but being almost six months old and still in newborn clothes is a little ridiculous!

We will get the biopsy results for rejection tomorrow.  We are optimistic since all of her heart function has been very good on both the echoes and during the cath today.  But, it will be good to know for sure.

So, more on that tomorrow!

July 30, 2009

Thankful for the Daily Grind

Posted in Itty Bitty Baby News, Transplantation at 11:12 pm by bk2nocal

Well, things have been moving right along in the past few weeks!  M got a heart on July 7.  She came off the ventilator about a week later, was moved up to the Intermediate ICU for about a week and came home to the Ronald McDonald house with us this past Saturday.  It has been a whirlwind.  We are just starting to somewhat figure out the meds schedule, etc. almost a week later!  I’ll give you an idea of our typical day:

At 7:30 a.m. we are supposed to take her vital signs – blood pressure, heart rate and temperature.  Right now, we can only do the temperature part because our custom made blood pressure cuff and machine has not been delivered.  This means that we have to go to the heart clinic at the hospital to have it taken.  We did this three days in a row at the start of the week, but the cardiologist said we could take today off and go in tomorrow…take the weekend off and go in on Monday.  It was nice not to have to get up and immediately leave the house this morning!

At 8:00 a.m., she gets the bulk of her medicines.  Right now, she gets cyclosporin, cellcept, magnesium glutonate, a shot of lovanox (my husband typically does that), predinisone, nystatin (a mouth wash that keeps her from getting thrush) and pepcid.  All of these have to be loaded into syringes and then placed in her feeding tube.

At 9:00 a.m., she gets methadone.  This is temporary as she is on a wean from it right now and will be done with the wean in the middle of August.  I also have her getting her 1/2 tab of baby aspirin, which needs to be crushed and then dissolved in water and given through syringe.

At 10:00 a.m., she gets lasix (a diuretic), enalipril (a blood pressure med), and iron.  I could give these all at 8 a.m. too, but it just seemed like too much medicine all at once.  This way, she at least gets a couple of hours to get the first stuff out of her system.

We are letting her eat on her own schedule right now, just to give her a bit of a break from the constant “messing with” she was getting at the hospital.  So, we let her sleep until she wakes up crying and then we feed her.  Sometimes it coordinates with her feedings, sometimes it doesn’t…so, we aren’t on a really tight schedule at this point.  She will also sometimes go 4-5 hours between feedings, while other times she won’t even make it 3 hours.  But, I feel like she needs some good rest, so the longer sleeps are okay with me.

As the day goes on, she gets more medications.  She gets the methadone every six hours right now.  She also gets the magnesium three times a day, so she gets more of that in the middle of the day.  She gets a nystatin treatment (we put it on a little dental swab and swish it around her cheeks, tongue and gums) three times a day as well.  At night, we do it all again starting at 8 p.m., but she gets septra at night as well as the meds from the morning, but no aspirin.

I have read different people’s ideas about keeping track of all the meds – color coding, etc.   But, it seems easier to me to just have a daily schedule sheet where I check them off as I give them.  I have it done hour-by-hour and we also record her diapers and her feeds and any other notes on the sheet. That way we have one sheet and we know what the other person has done.  I think it will be helpful to anyone who comes in to take care of her in our absence as well.

We had our first clinic appointment on Wednesday.  She had to go to the Short Stay unit to get a blood draw first.  This is also where we will go on Tuesday when she gets her infusion of some other medicine that has to be infused.  After that, we went to the heart clinic and she got a LONG echocardiogram (they were training a fellow on the machine and it took a really long time – longer than I remember taking in the past) and then we met with the docs for a short time.  They said that everything looked good.  They made a slight adjustment to her meds – up slightly on the cyclosporin, down a little on the predinisone (I guess she is being weaned off this as well…but, it will be a slow wean), everything else stayed the same.

We are constantly a bit nervous.  I mean, its hard to know what is going on in a five month old.  You can’t ask them how they are feeling or get any feedback from them.  So, when she is fussy, we get worried.  When she sleeps for a while, we are worried.  Whenever anyone gets close to her, because of her immune compromise from the meds, we are worried.  Its really tiring…but, its great to have her home.

She has her first biopsy on Tuesday and I THINK I will feel better after that is done as we will REALLY know the level of rejection she is in.  The echos are somewhat indicative, but the biopsy will be more specific.  And it will just make me feel better to know for sure.

Other than that, she is still having to take half her feeds through her NG tube, which is a little disappointing, but she’ll get better at feeding with time I’m sure.

Well, enough time spent typing this…back to the daily grind!  A daily grind I am sooooo thankful for!

July 18, 2009

M Got a Heart!

Posted in Cardiomyopathy, Itty Bitty Baby News, Transplantation at 11:47 am by bk2nocal

I have not posted in a while because things were pretty hectic in my life as of late.  As those who read this blog know, my daughter was suffering from dilated cardiomyopathy and she was admitted back into the hospital with cardiogenic shock on June 1.  She was listed for a heart transplant on June 11, after the pre-transplant team decided her heart would not recover and was too big to allow for her lungs to function on their own.  She was doing okay until about the fourth week into the hospital stay and then she took a turn for the worse.  We spent three miserable days in the PICU watching her get put on drug after drug to try to deal with her blood pressure, tachycardia, lack of oxygen saturation, etc.  Finally, the cardiology team decided to move her into the CVICU, where they gradually weaned her off many of the drugs and got her back into pretty good shape by the time her fifth week in the hospital began.

On July 6, we were informed that there was a heart for M.  At first, they were going to do the surgery that night, but then it was postponed until the next afternoon.  M was in surgery for about six hours total, was on the bypass machine for less than two hours and the new heart kicked right in.  She came back from surgery looking good, but with a pacemaker because the new heart was not beating fast enough.  She did good post-op and came off the ventilator on July 14, chest tubes and pacemaker wires out July 15, moved to the Intermediate ICU July 16 and we are scheduled to be released to the Ronald McDonald House on Thursday, July 23!

It has been a whirlwind of activity!  M is doing well.  She is on 11 medications, which is actually much less than I thought she would be.  Some she takes twice a day and others only once a day and a few three times a day.  The hospital provided us with a daily schedule that will really help out with keeping track of things and we will have to stay at the Ronald McDonald house for three months to make sure that the heart and M is doing well.  She is still struggling a little to get all her feeds by bottle, so she will probably go home with an NG tube in to help with that and insure that she gains some much needed weight (she is five months tomorrow and only weighs eight pounds!) and grows a bit.   She was a preemie, but even for three months, eight pounds is not nearly big enough!

I plan to keep this blog going and posting new information on cardiomyopathy, trasnplant, etc.  I know there have been some stories in the news as of late, so I will have to catch up with those over this coming week!  Our miracle has happened – M has a new heart and will now be able to get out of the hospital – and all very quickly for such a small baby!  We are very, very, very thankful!  And now we’re looking forward to learning a whole new set of skills as we take her home!

June 20, 2009

From Germany with Love…The Berlin Heart

Posted in Berlin Heart, Cardiomyopathy, Itty Bitty Baby News, Transplantation at 1:40 pm by bk2nocal

Although M has now stabilized and we think she will be able to go without any “bridging” devices, when there were doubts talk began of devices that will allow her to stay alive even with a non-functioning heart.  It used to be that the only available “bridging” device for heart patients was the ECMO.  Although this machine is effective, the length of time a baby can be on it is limited – usually a matter of weeks.  Because infant-sized hearts are often not available that quickly, another “bridging” device – the Berlin Heart has begun to be used more frequently.  This device allows children to be on the bridging device for longer periods of time AND allows them to live semi-normal lives, moving around, playing, doing all the normal kidstuff they usually would be doing, while waiting for a transplant.  It is truly amazing what medicine technology can do today – and we are thankful for each new device to which we are introduced – as it means that M has a better chance of both surviving and thriving despite her big heart!

Right now, it is looking like M will not need to be placed on the Berlin Heart, as her heart is functioning well enough to not need external interventions.  But, this recent story on a baby in Canada, not only can the Berlin Heart help in cases of bridging, but it can also be used to heal a heart!  If you’re craving more information and an example of the heart being put into use in an infant, you can read this press release from 2007 on an infant in Florida…

Hearts in the News

Posted in Health, Transplantation at 1:14 pm by bk2nocal

I wanted to share a few articles that I came across on CBS News this past week that have to do with heart problems and transplants.  Some are informative, some are inspirational…enjoy!

Pump Gives New Hope to Heart Patients This article discusses the Heart Mate II which is an external pump designed in a size that fits women, that can provide assistance to hearts that are failing in women who are too small for other devices currently on the market.  The article discusses the fact that currently these devices are only available to those awaiting transplant – much like the Berlin Heart was for Mackenzie, but could, in the future, be made available to those who are perhaps older or are not transplant candidates for one reason or another.  This would allow them to live longer, more active lives with their failing hearts.  The other thing the article gives a short amount of discussion on is the fact that in this 27 year old woman, the pump actually HEALED the heart.  So, she was able to come off the machine and not have to have a transplant after all.  So, there is a chance that transplants could become a much less necessary intervention!

Doc’s Prom Pomise Fulfilled This article is a tearjerker!  Stefani Pentiuk had a heart transplant at age 8 and one of her doctors then (sounds like he was probably a cardiology fellow at the time) made a promise that she would not only survive the transplant but that he would take her to her high school prom.  Well, he didn’t take her to the prom, but he did show up to dance with her!  Although Stefani had to have a kidney transplant recently due to rejection problems, she is not only surviving, but seems to be thriving!

Study: Heart has ability to Heal Itself This article discusses new findings that heart cells are regenerating (something that was unknown before) and gives hope to improving heart functioning after heart attacks, etc.  It has some greaat interactive extras included as well!

“Polypill” for Heart Passes Big Test As someone who had to give her three month old mulitple medicines multiple times a day for a heart problem, something like this sounds incredibly promising (although I’m sure it would not be calibrated for infants very soon).  This one pill combines the necessary ingredients to ward off heart failure – “low doses of three blood pressure medicines (atenolol, ramipril and the “water pill” thiazide), plus the generic version of the cholesterol-lowering statin drug Zocor, and a baby aspirin (100 milligrams).”  M was on Carvedilol, Analipril, Lasix (water pill) and baby aspirin.  I don’t think she had to take the cholesterol-lowering drug…but everything else…

June 6, 2009


Posted in Cardiomyopathy, Transplantation, Uncategorized at 2:54 pm by bk2nocal

brokenheartThe last post here was April 7.  Closely following that date, M was put in the hospital for RSV, which is a respiratory virus.  She was in our local hospital for four and a half days with respiratory distress, getting breathing treatments and on oxygen, before being flown to a bigger Children’s hospital to be put on a ventilator to give her some breathing relief.  When she arrived there and they looked at her x-rays, they noticed a very enlarged heart – five times the normal size!  Being new to this whole mom thing, I had no idea what this meant.  It was diagnosed as cardiomyopathy.  After EKGs and an Echocardiogram, she was found to have an extremely low-functioning left ventricle.  She also still had a respiratory problem, so she remained on a ventilator and was put on milirinone and heparin for her heart.  After one week there, she had a heart catherization to check the structure of her heart, which was found to be fine.  After that, they decided with the low functioning of her heart, she should be in a place where they would be better able to handle her heart failing, so she was shipped to Lucille Packard Children’s Hospital (LPCH) at Stanford.  We were informed that a heart transplant could be in her future, but that they would do everything they could to treat her by other means.  She was still being treated for her respiratory problems as well.  She spent three weeks in LPCH, two weeks with a ventilator and one week without.  She was weaned off the milirinone, which is an IV-only drug, and started on Enalapril and Carvedilol, which do similar things to milirinone but can be given orally.  It isn’t easy to give a three month old anything orally, but its a lot easier than having her on an IV!  In addition to those two drugs, she was also on Lasix to keep fluids from building up in her system and causing pulmonary edema, among other things.  In addition, she was on procrit or epogen to build up her red blood cells.   After almost a week in the hospital, getting her back on the bottle and learning how to give her shots of procrit and put in an NG tube if necessary (all of which my husband did because I was sick with some kind of bronchial infection), we were able to take her to the Ronald McDonald House with us.  After three days there, we were able to take her home with us. 

Life was definitely different.  We had a tight schedule for feedings and medicines…she was on the three heart medicines – enalapril, carvedilol and lasix twice a day, the procrit shots once every other day, a multivitamin once a day, iron three times a day and aspirin once a day, which we had to grind up and put in water to give to her.  It was all a little overwhelming to be sure.  We were home with her for two weeks and came back to Stanford for a check-up and she seemed to be doing well.  They took her off the procrit and iron and sent us on our way.  We decided to go to my in-laws for a visit before a return appointment to Stanford for a genetics appointment the following Tuesday, since their house was about the same distance as our house from Stanford.  She seemed to be doing okay, although she didn’t like the long car ride very much.  She had gained weight at the genetics appointment and although she had a touch of diahrrea, all seemed pretty well.  We headed home with her.

We were home for another week, during which the diahrrea continued and she became extremely fussy each time she was going to have a bowel movement.  She would scream, fight us, scratch, turn very red, etc.  Sometimes for more than an hour.  It was extremely difficult to deal with, but everyone – our pediatrician at home, the cardiologist on-call at Stanford, friends and family, just kept saying it was some kind of GI condition and we would just have to wait it out and deal with it.  I posted on the Children’s Cardiomyopathy Foundation’s  (CCF) listserv and asked about it and a number of people wrote back saying they had experienced the same thing with their babies.  Finally, she seemed to improve for one day, although she was now having bowel movements every feeding, sometimes twice, whereas before she was having one or two a day at most.  That last night she was really “pulling”  or retracting at the chest and around her lungs and she was looking really pale, so we called the cardiologist on-call at Stanford again and she advised us to take her into the ER. 

So, last Sunday night at 11 p.m., we took her to our local ER where they attempted to stabilize her and were advised to ship her back to LPCH.  She was flown out at 5 a.m. on Monday morning and intubated as soon as she arrived.  She has been on the ventilator since.  She now has tested positive for an infection of some sort.  The pre-transplant team came and spoke to us yesterday, and they have advised us to list her on the transplant list ASAP once her infection is over.  So, we are looking at the middle or end of next week.

In the meantime, we MAY be able to take her home, but we are going to have to move in order to be within the requisite two to three hours of Stanford in case a heart comes in.  At this point, there is so much to think about – moving, coordinating work with hospital stays, being in Stanford for months afterwards if she were to get a transplant that I can’t even really sort it all out.  We are currently staying at the Ronald McDonald House again.  It is a lifesaver to be sure.  Although we have friends and family in the area that would be happy to house us, but its just easier to be close to the hospital and not have to worry about being an inconvenience to others…there is enough to worry about without having to worry about that.

So, our experience with transplant starts now.  I am amazed when I see the kids who have had transplants and how well they are doing.  The statistics for success are pretty high nowadays.  Its a difficult thing to deal with, but at least it can be dealt with.  So, this blog is taking a slightly different focus and I am hoping that it can help others who may be in similar situations in the future and help our friends understand what we’re going through.  I have another blog at Carepages under Macpeterson that logs our experience so far in more detail. 

I am including links to as many things as I can think of that other people may want to read about and understand.  Cardiomyopathy is a pretty rare thing – according to the CCF, 12 children out of every MILLION are diagnosed with cardiomyopathy.  So, M has a pretty rare disease.  But, she is in very good hands.  The LPCH does a number of heart transplants on children every year.  So, if we have to have something done to her, she is in the best possible place for it. 

This has been a pretty lengthy post.  I could probably go on forever, but I won’t.  I am sure I will have plenty of future posts to share information and more of our experience!