June 22, 2009
Well-said…
I was reading the blog of another family who had a child in the PICU with Mackenzie and came across a post on courage that I feel can not be restated with any improvement. So, I’m providing a link to it below. Just a bit of background on this family and their connection to us:
When Mackenzie first went into the hospital back in April, she was next door to a little girl whose room was covered in pictures and art projects and happy objects. I used to walk by that door and hear music coming from it and see all the visual happiness and it would make me feel a little better about being there. When Mackenzie came back to the hospital early this month, she was placed in a room with two other children and one of them was the girl from the visually happy room! She was now not in a private room, so there was not the volume of objects, but her bed still had pictures and art projects on it. On the second day, her sisters and brothers were standing bedside singing Twinkle, Twinkle Little Star to her and it made me smile. Over the coming days, her brothers and sisters would come to visit – always happy and smiling and taking pictures and singing – it was truly a happy distraction to have…when I saw their mom in the lobby one day I told her that I appreciated her kids being so well-behaved and always so happy and that it was nice to see healthy, happy kids in the PICU every once in while. She thanked me and we began greeting each other in passing. Soon after, Mackenzie was moved into a private room and her second day there, we got a gift from “Charity’s Family”…the mom and her kids had dropped off a hand-wrapped cute little outfit for Mackenzie…I was truly touched.
I went to thank them and met the grandmother – an incredibly nice woman. Charity has since moved on to home and I hope she is doing well and will continue to thrive. The following is a blog post that Charity’s mom wrote while Charity was still in the hospital and it truly captures the understanding that you begin to gain when you have a child in the PICU…things sometimes seem bad, but we are LUCKY that Mackenzie has something that can be treated and that she will most likely recover from and go on to live a happy and healthy life. So many others are not so “lucky” as us…and yet they go on each day hoping for the best and giving their children what they can. I can’t say it better, so I encourage you to read “Courage…”
June 20, 2009
From Germany with Love…The Berlin Heart
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
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 15, 2009
Gift Ideas for Preemies and Hospitalized Children
I came across a post on Frugal Gifts for Preemie Parents today over at Baby Cheapskate and thought it was such a good resource post that I should share the link here. The woman who wrote the article speaks from the experience of having a preemie, and I would definitely concur from my own experience as a parent to a preemie. But, now, writing from the perspective of a mom with a child in the hospital, many of them are just as applicable! I know that I have a ton of people who ask what they can do, how they can help, etc. and the suggestions she gives are ones that I would not necessarily offer up to people, but that are wonderfully useful and helpful! I am sure that others of you will have someone who has a preemie in their lives and this is a great resource for you to choose gifts.
June 12, 2009
Coping Mechanisms
Its strange to be spending so much time in a place where emotions run so high and to see different people coping with it in such different ways. Obviously, not all of us are in the exact same situation, but they are at least similar – children in the hospital for long periods of time and with serious conditions. Many are far from home and some do not have any support system other than those they meet at the hospital. My husband and I are lucky. Although we are away from home, we have a strong support system, with many friends and family in the area. Rare is the day we do not have someone to visit with outside of those we meet at the hospital and ourselves. It is good to have distractions and people who are just visiting and not here continuously. I can see where this would become all-encompassing if you did not have an escape.
I have always been one who has thought that I should let the experts do their jobs. I know that doctors are human and they can make mistakes, but in this environment, where there are so many people working on the same case and so many checks and balances, I think that mistakes are probably relatively rare. And I know that cardiomyopathy is pretty rare and there are not answers to every question. I imagine that must be frustrating for the doctors as much or more than it is frustrating to me. Today, the doctors spent four hours replacing a Central Line in M after her last one became dislodged. Because she is so small, this is a difficult process and she went through a number of doctors attempting to do it before they finally called someone in from the cath lab to get one placed in her groin. She has sutures in her other groin and in her neck from previous attempts and she looks like a little pin cushion or voodoo doll with all the holes. I guess I could get upset and impatient and complain that they did a poor job, but it seems to me that they all were doing the best they could. They felt bad and were extremely apologetic. They looked tired after the four hours. Their jobs are much more difficult than I could probably ever imagine and I can’t think of complaining to them about the way they do the job. Others are not so understanding. They may complain and demand explanations and that may make them feel better. It makes them feel more in control of the situation.
I guess for me, I’m not supposed to be the one in control of this situation. My daughter is sick, with a very serious illness and I don’t have the training or experience or knowledge to be in control of this situation. Its hard to not be in control, especially when it comes to your own children…but, it has to be done. I don’t have any choice but to relinquish control if I want what is best from a medical standpoint. I wish I wasn’t in this situation, but I am, and I have to do what is best for her, not what makes me feel better about myself or my situation. I consider myself to be a pretty intelligent person, but I didn’t go to med school and I didn’t get hired by Stanford to practice medicine. All I can do is be there for her, make sure she has what she needs from a personal standpoint – blankets, toys, etc. and then let the doctors do their job and hope for the best.
So, another day in the hospital, where human behavior is at its best (a family that had a baby next to ours brought Mackenzie a gift this week – a cute little pink outfit and just dropped it off for her while we were out) and its worst (people complaining about and to doctors and nurses about things beyond their control).
I’m thankful for all of the people who choose to go into the medical profession and choose to work with children in seriously difficult situations. It can’t be easy and I certainly could not do it myself. I can’t imagine working with sick kids all day and being able to keep a smile on my face – but we have many nurses and doctors who do just that. They make you feel confident and comfortable and well-cared-for. And, that, right now, is really all I can ask for.
June 10, 2009
Self-extubation = FAIL!
Well, Mackenzie’s attempt at self-extubation was a failure. She lasted over 24 hours on the CPAP, but this morning was struggling to breathe, had a collapsed left lung and bad blood gasses and was just plain not doing well. So, they had to reintubate. They tried to go down with the same size tube as last time, but it was a little big, probably because her trachia is swollen from ripping out the one yesterday. So, they went down a size and will probably have to replace it once the swelling goes down. She is also getting a new arterial line to replace the one she ripped out of her arm yesterday. Its been an eventful couple of days for her.
I tried to hold her this morning but she was desatting pretty badly and just didn’t seem at all comfortable. I guess they have ordered her a Berlin Heart just in case she needs to go on one next week. I look for that to happen – if not next week, soon after. I am almost looking forward to it just because it sounds like she will be healthier and more comfortable with it than she is with her big, overworked heart. Its weird to look forward to smoething so extreme. She will also probably go active on the transplant list next week. They are waiting for two genetics tests to come back, which should be in the beginning of next week.
Its hard to think about her having to be in the hospital for months and months, but with the Berlin Heart, she has to stay here in the hospital. But, she will be healthier and she will be able to do typical baby stuff…which right now is not really able to happen. I just think she needs to be comfortable in order to start doing the baby stuff she should be doing. Its hard to even think about that stuff when she is intubated and not able to do much, but I don’t want her to be way behind if she doesn’t have to be.
Well, the arterial line is in. I’m going to go see her now…
June 8, 2009
Life Upended…
As of now, M is going to be listed for a heart transplant the middle-to-end of this week. As if this news is not enough of an upheaval, we have also realized that we will need to move in order to be within the 2-3 hour radius of the hospital in case she gets to go home in the meantime. Hearts only last four to five hours after being removed from the donor, so M has to be able to get here to the hospital within three hours of them hearing there is a heart coming available. So, we are going to give notice on our place (that we love) in Chico and I’m going to be temporarily moving in with my sister in Davis. This will save us money on rent for the next month or so, when my husband will be gone working in Michigan (he works five weeks at a debate camp there) and I will most likely be staying mostly at the Ronald McDonald house while M recovers from her latest hospitalization. We’ll put our stuff in storage and move only necessities, then reevaluatel where we are at the end of July – maybe we’ll leave our stuff in storage, maybe we’ll find a place in the Davis/Woodland area to move to.
I really hate moving. And it makes all the worse that we are moving from a place we really like a lot, but it has to be done. This whole thing has really upended our lives. Its difficult to figure out what to prioritize, where to find stability and how to plan for the future when you don’t really know what it holds. But, I suppose that we will adapt and we will learn more and be able to plan better once we get used to this new state of being.
We are currently waiting for the doctors to round so we can hear where M stands this morning. Will she be extubated? Is her infection gone? Can she be listed on the transplant list now? Can she start getting her weaned off milirinone and back on her oral meds? Will she be able to bottle feed again or will we have to deal with an NG tube for the time being? Are her lungs working okay? If she gets extubated, will she be able to stay extubated?
One of the other families who has a three-year-old in here in the hospital left a gift of a cute little pink, organic outfit for her yesterday. So sweet and such a kind thing to do. I need to go get a thank-you card for them…and maybe a picture frame because they love taking pictures.
I’m not sure what life will be like here for five weeks while my husband is gone to Michigan. I’m sure I will have lots of friends and family willing to come and visit me and the baby, but it will definitely be different.
So much to think about…so much unknown.
June 6, 2009
Cardiomy-whata-thy?
The 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!
Itty Bitty Baby 