Erin's Blog

2007-12-19T20:33:00.000-08:00

Hello! finally a moment to leave a note. We are doing well, Abram is over a cold and constant diarrhea so mama and dad are getting better rest. He had his first Christmas with our good friends, the Durans, last night and seemed to be worn out today from it all. He received a ton of toys and the cutest outfits! He had a great time and seemed to be in the Christmas spirit! We continue to visit doctors about once a week. Abe's liver is slightly enlarged and the docs are trying to find out why. Nothing real obvious. He had a swallow study and we learned that Abram aspirates thin liquids so he is not on the bottle right now, but taking in bites of babyfood and pureed food that is thickened. Friday we will attend an occupational therapy consult which will hopefully teach us how to feed abram his formula. We were making some progress with oral feedings, slow, but progress - until we learned he was aspirating and had to stop, hopefully only temporarily. We are so busy keeping the house spic and span for showings as we look for ranch style home for Abram to live in as we expect stairs will tire him easily, and since I can't return to work we need to downsize a bit. Sad that we have to leave our first house where we have so many memories, and the comfort of knowing only we have lived here so we know what germs are here! But we will take these memories, and clorox wipes, to the next house and make it our home. That's all for now. Love to all, Erin

2007-11-29T11:07:00.000-08:00

BELOW IS AN ARTICLE ABOUT A LITTLE GUY IN TEXAS WITH BARTH'S...COPY AND PASTE IN YOUR BROWSER WINDOW...

http://www.oaoa.com/news/keli_10638___article.html/holly_boy.html

2007-11-29T11:06:00.001-08:00

http://www.oaoa.com/news/keli_10638___article.html/holly_boy.html

Great News

2007-11-29T05:29:00.000-08:00

On our wayto the doctor for immunizations, so not a lot of time to write. But, wanted to pass along that Abram had an echo of his heart yesterday and the ejection fraction is 59%! Normal is 60=75%, we are exstatic with this news. The medications are working and he will probably have to be on the forever, but we are thankful they are working! More later. . .

2007-11-15T14:51:00.000-08:00

Hello! I am having a hard time finding the time to blog about Abram so am going to try something new. I will perioodically, hopefully a couple times a month, send out updates on Abram with pictures. I may still use the blog, but again, it's hard to find the time to log in and talk. Please send me your email address if I don't already have it at emiller14@sbcglobal.net. Thanks!

2007-11-03T12:11:00.000-07:00

Abram had another appt with the GI yesterday who is making referrals to the endocrinologist to help find out if Abram has hypoglycemia, something commonly found in boys with Barth's. We need to know before tapering down feeds at night, and prior to any surgeries for fasting reasons. We are looking at Abram possibly getting a Mic-key, as I might have mentioned in the previous blog. We are also scheduled to see a urologist and have an ultrasound of Abe's kidneys and bladder. There is a possibility that Abram has kidney or bladder stones or sediment. Not much otherwise. We are looking forward to our first real trip back to Fort Dodge for Thanksgiving, keep your fingers crossed everyone back in Iowa is healthy for our return!

2007-10-30T19:07:00.000-07:00

Still here...

2007-10-30T18:39:00.000-07:00

It's been quite some time since I've had the chance to blog, my apologies! We have finally confirmed Abram's condition, and yes indeed he does have Barth's Syndrome. I will try to post some information from it, if you want to learn on your own there is a foundation website - http://www.barthsyndrome.org/english/view.asp?x=1. Basically, Barth Syndrome consists of dilated cardiomyopathy (dilated and weak heart), neutropenia (lack of blood cells that fight bacteria), delayed growth and development, muscle weakness, exercise intolerance...other symptoms can include feeding issues (we certainly have those :)), diarrhea, fatigue. There are degrees to which all of this effects each boy, so we have yet to see to what "degree" Abe will suffer with the symptoms. Some boys can't go to school full time due to fatigue, most are able to walk on their own but have some gait issues, and typically the neutropenia (or infections) lessen as the boys get older. Hard news, but good to know what we are dealing with. Abram is doing rather well. No fevers, hospitalizations lately. A cold here or there. Occupational therapy has started and he is already making progress. He is sitting in the highchair once a day and tasting baby food. He much prefers salted baby food...has a thing for salt, not liking much of anything else (I have read that this is a preference amongst babes with Barth's). He began to suck on the bottle yesterday and drank 5-10 ml which is good since he hasn't performed with the bottle for 3 months. Almost rolling over - something he mastered long ago before he became so ill. We are waiting for a tooth, but he has grown more hair, dark hair! Abram remains a happy guy, smiles and laughs a lot. Pretty laid back and not real picky, loves to be held and talked/sang to. He keeps us busy with feeds still every three hours but is on a lesser calorie formula which he tolerates much better. Not vomiting but maybe once a day or less and usually due to mucous more than the formula. We are having a meeting with a surgeon to discuss a Mic-key button for his stomach so we would feed him through his stomach and get the tube out of his nose and off his face. I think he would appreciate this, I know I would - no more 3 am tube placements. As you may read Barth Syndrome is very rare and there is not a whole lot known about it. There is no cure or treatment, the treatment is treating the symptoms/conditions the Barth Syndrome causes. We are getting in touch with some other families that are affected by this disease, none of which live close to us but it's nice to know other's who are dealing with the same disease.

2007-10-11T16:15:00.000-07:00

2007-10-11T16:06:00.000-07:00

It's been some time since the last post so I thought I would type some quick updates. Nothing too exciting has occurred. We are waiting on the genetic test for Barth's and expect that to be here sometime in November. We visited with a new geneticist who suspects Abram does have Barth's Syndrome, is running some blood and urine tests to confirm a "clinical diagnosis" while we wait for the "genetic diagnosis". I am learning genetics are very complicated, so if Abram has a mutation on the "Barth's Gene" it may or may not be called Barth's. . . Abram continues to gain good weight and is above average in his age group for weight, but still at 3% for heighth...this would explain the Barth's Syndrome size status (typically shorter and smaller). Abram had another echo and his heart shows no more improvement, but no worsening. We continue to meet with GI and discussed possibility of a g-tube in the future (tube that goes directly in the stomach rather than down the nose). We are a little tied on this, there are pros and cons to everything. We are waiting on hematology to come up with a plan to treat Abe's neutropenia so we can start living again and be around others. Starting with occupational therapy to help with getting back to oral feedings, and have a swallow study planned sometime in the future before we can even consider oral feeds. The GI doc wants to make sure he is not aspirating because he chokes while he drinks. We are reading about Barth's and feel this is a probable diagnosis. So much to know as it's a very rare and complicated illness, which may mean future trips to a different state to see a doctor who has treated boys with Barth's since no one in the KC area has. Abram continues to be a content and happy guy. Very tired, napping frequently but keeps us busy as his feeds continue when he's sleeping or not! Tried a new med for vomiting but it made him vomit more, so we are reducing the calorie of his formula to see if that helps. He's currently on an increased calorie anyways for weight gain, and it's obvious he is not needing that!

2007-09-27T14:39:00.000-07:00

A busy week it has been, one last appointment tomorrow (opthalmology).

Genetics is running the TAZ gene test to rule in or rule out Barth's Syndrome, but refuses to do any other testing stating Abe "looks really good" and thought that he would be a "whole lot sicker" if he had Barth's, any storage diseases, metabolic disease, or chronic neutropenias. Geneticist thinks the entire cause is the enterovirus - however, we recently found out the type of enterovirus and this would contradict the "virus being the cause" theory.

Hematology shared several theories with us about ABe's low/non-existant neutraphil count. The firsttheory and test is a Complete Blood Count to see if the neutrophils have increased (found out today that they have not). Second test is to see if the enterovirus Abe had is spawning over and over again in Abe's blood (which could be happening even if he tests negative for enterovirus in his nose and bottom), and the doctor said if this is true it could be keeping his neutraphils (bacteria fighting white blood cells) low or non-existant. The other theory is that Abe's blood has created an antibody that fights against the neutrophil production. If this is the case he will be diagnosed with what is called "Benign neutropenia of Childhood" which resolves usually by 4 years. There is treatment for this, an injectible that can cause extreme bone pain but may only need to given when Abe is sick with a fever vs. like a maintenance medication. One of these tests or the other takes 2-3 weeks, the other 2-3 days...I can't remember which one is which length of time. Of course the hemotologist will look for Leukemia which is a possibility, but it's unlikely with current blood test results. Due to having neutropenia, it's likely Abe will need to have his bone marrow aspirated once a year to check for any changes in this blood that would signal a leukemia because the neutropenia puts him at a higher risk of getting Leukemia. We did get Abe's neutrophil count test from yesterday and it again came back at 0 again so it's likely we will be doing a bone marrow aspiration sometime in the future to check for abnormalties.

More news...Abe's virus was finally typed to be the Coxsackie A24. . .this strain does not attack or damage the heart. Therefore, we are likely looking for another cause and condition that is causing the heart disease and neutrophil problem - which is a good reason to have the Barth gene ran since these are classic symptoms of Barth's. A couple of our docs are adamant that this is what Abe has, another couple are sure that he does not have this. So, as you can guess we are anxiously waiting for the test results that take 6-8 weeks.

Went to GI today and Abe's on a new med to help with motility that will hopefully help Abram to eat at a faster rate rather than taking an hour and a half. OT at Children's Hospital will be meeting with him to evaluate him for a swallow study (he chokes a lot). He is starting OT through Infant and Toddler services, we are in the "family plan" stage so it will be a few days before the actual OT starts.
Will report on opthalmology if anything significant comes out of this appt. Abe is now in the 10-25% for boys his age/weight/height according to GI, this is progress. Kicking a lot, still smiling, and active when awake.

Look Ma, I do have clothes!

2007-09-20T20:54:00.000-07:00

2007-09-20T20:35:00.000-07:00

It's been a week since a new post, I have to apologize. Not much has happened as we haven't had any doctor appointments, and timing just isn't of the essence for me to blog! We continue to hold Abram A LOT and he is gaining weight, 14 pounds 11 ounces today. Still vomits which is distressing for us and him, but not affecting his weight thankfully. The more we hold the less he vomits it seems. Hopefully with his growth and bottle feeding starting we will see less of it. Next week will be a busy week, so I don't anticipating blogging much or at all, just an fyi. We see the geneticist and hematologist next week, and Abe start occupational therapy for help with feedings. Doesn't sound like much, but anything in addition to our regular routine takes away from precious nap time which effects us all :). Abe has caught on to Peek-A-Boo and beginning to understand how fun raspberries on the belly can be. He is very content most often, smiley, and chipper...

2007-09-13T12:53:00.001-07:00

Today the home health nurse was here and Abram weighed over 14#. He's more strong, able to pull his head up when you pull on his arms. He gave me his first full blown belly laugh today, as I was wiping him up after changing his diaper. Of all times!Blood count for neutrophils remains at 0 so Abram will be having a bone marrow aspiration done Sept. 26. We will be starting occupational therapy soon for feeding help as Abram can have the bottle twice a day x 10 minutes. We are also starting with a new GI doctor in October.

GOOD NEWS

2007-09-10T20:08:00.000-07:00

Finally, some definite good news. Abe's appt. at the cardiologist today went well. His echocardiogram showed about a 25% immprovement in his numbers of ejection fraction and left ventrical size. This means his left ventrical has shrunk a little as it was so enlarged, his heart is beating stronger and is less weak (went from 27% to 47%), and she is optomistic about a full recovery of his heart! We were elated to get this news. We aren't out of the woods yet, about half way there. We pray that the medications continue to correct his heart...
Had blood drawn today for neutrophil count and some immune tests that willl take a couple weeks to get back, and urine sample to measure calcium. Will report back on results.
Thank you for all your thoughts and prayers out there, they are working!

Excited for Monday

2007-09-09T15:59:00.000-07:00

Tomorrow we head to the cardiologist to see how Abe's heart is holding up. He has been more sleepy, sleeping more often through the day but more active when he is awake. He kicks like crazy, grabs and holds toys, jibber jabbers, smiles, and has started a mild belly laugh. He rolled over from his side to his belly twice yesterday, progress! We also have a new appointment with the geneticist Sept. 25. Will have to do more research to get prepared so we can ask for the tests we want, as the geneticist refused us an appointment twice even after formal referrals from the cardiologist and pediatrician. I believe the goal will be to test for metabolic disorders i.e. Barth's, 3-Methylgloc., congenital neutropenia, Kostmann's, etc. And then we see the hematologist October 2 which will be interesting too. In the past, in the hospital, the hematologist talked about studying Abram's bone marrow for answers so we are excited to get to the bottom of all of what's going on!

Infectious Disease Update/Visit from Nanni and Papa

2007-09-05T11:35:00.001-07:00

Today we saw Dr. Newland, Infectious Disease doc who has been caring for Abram through his MRSA (staff) and virus issues. Dr. Newland reiterated that August stool and nasal tests confirm that he no longer is carrying the enterovirus or MRSA. However, in order to be considered "de-colonized" of MRSA and enterovirus, these tests must be run three more times and return with negative results. Our #1 test was today, two more to go. Dr. Newland also discussed with us the neutropenia and his thoughts were to get genetics involved, and that it is now unlikely that the enterovirus is causing the neutropenia since the virus is likely out of Abram's system. He is going to talk with genetics and a genetic resident he knows about possible metabolic tests since it is likely something other than the virus driving Abe's blood count low. He wasn't sure if this is something that can be tested since Abram received a blood transfusion and immunoglobin in the hospital in July. We no longer have to follow up with him or infectious disease unless something returns. Next Monday we see the cardiologist and have another CBC. Can't wait to see what his blood will do this time around barring he no longer has viruses or infections (that we know of anyway.) Keep your fingers crossed that his neutrophils are up and Leukocytes are down!

2007-08-31T11:58:00.000-07:00

2007-08-31T08:06:00.000-07:00

The Chubster

2007-08-30T20:54:00.000-07:00

The nurse was by today and Abe has gained 40 grams/day for the last 10 days. His goal was to gain 30 grams/day. He is now weighing in at 13.2 pounds and looking fatter than ever. WE are eagerly waiting for some muscle mass that has to be making it's way soon, especially the way that Abe kicks!

Wednesday already?

2007-08-29T19:48:00.000-07:00

It's been a few days since I've posted, time really does fly. Abram's diarrhea is letting up, stool sample came back negative for c-diff infection, thank goodness. He isn't vomiting as much, maybe 1-2 times a day as it used to be 2 times a day plus that. He is sticking his fingers in his mouth more and more, and makes himself choke which leads to the coughing/gagging then vomiting so we are trying to watch him during and after feeds. I hope the pacifier doesn't become permanently attached to his face! We didn't go to the cardiologist as planned on Monday, spoke to her on the phone and we agreed it would be more risky to go to the clinic due to Abe's low blood count. She assured me that it's unlikely any change was made in Abram's heart since it's only been two weeks from the last appointment, and his breathing/color hasn't seemed to change. Our next appointment is Sept. 5 with infectious disease doc. Otherwise, not much going on medically.

Alec's celebration of his life is this coming Sunday. I'm posting his electronic obit on the site if you are interested in reading. He was such a special guy, and all our hearts ache with missing him. As a new mother, I can't imagine what it must be like for Alec's parents. Especially his mother who was so dedicated to him and his well being.

Alec, I miss you so!

2007-08-25T08:53:00.000-07:00

2007-08-24T19:37:00.000-07:00

Abram was seen at the GI and the doctor was not concerned with Abram's reflux. Because Abe's weight and height remain in good ration with each other (at 50% marker). His height/weight compared to 100 other boys his age is at the 5% mark, anything less would be cause for concern. Even though Abe vomits a lot it's not effecting his weight significantly. The doctor was more concerned about Abram's diarrhea being in excess from the antibiotics he was on, ordered labs for CBC and electrolytes. Needless to say we will not be returning to see GI unless Abe's feed tube becomes problematic or he begins to lose weight. . .this is a good thing.
GI doctor called 10:30pm last night to report on the blood work. Abe's neutrophils (bacteria fighters) were back to being very low again (152) and concerned about the diarrhea and antibiotics causing another infection. He contacted Infectious Disease and their suggestion was that we go to the hospital for admit to monitor for infection and have stools tested. Reluctantly we agreed. What could the nurses be doing at the hospital that we weren't doing at home or a quick trip to the lab???? The hospital is a scary place when neutrophils are so low.
We were hospitalized for a total of 16 hours, and not much happened. Results from stool, blood and urine all negative for staff. Enterovirus continues to be in Abe's stool which is puzzling that it has hung around this long. We have plans to follow up with hematologist to further look at causes of low neutrophils and with Infectious Disease to monitor the staff and viral issues.
Ironically, as mentioned earlier in my blog about my little guy - Alec, was still in the hospital and moved to intensive care yesterday prior to our hospitalization. We arrived on the same floor only to move into his room that he had left. . .his name was still on the door!
We are home now, but with great sadness have to say it's been a very sad day as we lost Alec to heaven today. He did not make it through anesthesia when in for a biopsy. Thankfully, I was in the hospital with Abram and could be there with Alec and his family. I believe God was working at this time as there was no way that I could have been with them if we weren't in the hospital where someone could look after Abram and I could be in the same place at the same time in the event I needed to get to Abram quickly.

2007-08-21T19:21:00.001-07:00

Abram is doing pretty good for the moment. He continues on antibiotics and I cannot wait until this Friday when we can hopefully stop them! This is the house of puke and diarrhea! Abe has lost a little weight because of the effect of the antibiotics, but know he will gain it back once they stop. We continue to count diapers daily, and hit an all time high yesterday at 22! Bryan and I are treating our "nares" (nostrils - we are getting good with the terminology) to "de-colonize" any MRSA (staff) that we may have, and rid it for good. I guess that is where MRSA likes to hang out in healthy adults. The nurse was here yesterday and she thought Abe was doing well, heart steady at 126 and color good.
Abram is beginning to laugh, he doesn't have it all down yet but making a happy grunt that continues for just a little longer than a normal grunt. He and I go back and forth taking turns laughing at each other, it's hilarious!
Found out my other little guy is in the hospital - Alec, the little boy with Down's that I care for. It's likely we swapped rooms at Children's Mercy as they are on the same floor! Sounds like he has a bad virus of vomiting and crying constantly. He too has heart complications/conditions so they needed to take him in just in case. Please say a prayer for him and his family!

Home Sweet Home

2007-08-19T15:47:00.000-07:00

We are home again! Abe looks good, is on a couple new antibiotics for a week and then hopefully we will have the MRSA (staff) licked, and have one less thing to worry about. So far nothing has grown from his blood culture, no infection or MRSA in urine or blood but this can grow out for a few days until the test is officially done. We see the cardiologist in one week and have more blood work, GI specialist this week, and Infectious Disease in 2 weeks. We are no longer involved with hematology as long as Abe's blood stays good and we hope the same with infectious disease after our follow-up appointment. Then we can put all of our focus on the heart and genetics, making life a little more simple.

Finally, some good news! (a mixed bag that turns out sweet)

2007-08-18T19:22:00.000-07:00

Abram had his 4 month well visit with his pediatrician on Friday, and received his immunizations. It was incredibly nerve racking to be in a doctor office where sick kids are and Abram being so susceptible, or so we thought at the time. We came home after our appointment and all was well until 1:30 am Abe woke up crying and sweaty, had a temperature of 103, but cooled down to a 100 temp a couple times after. We went to Urgent Care "just in case" as we didn't want to take any chances of his staff infection becoming worse or occurring other places other than his bottom, knowing that it was likely his immunizations that was causing the temp. Long story short, we are now admitted at Children's Mercy (KC) and likely will be until tomorrow.
Blood has been drawn and cultured, no growth yet which is a good thing. As a precaution Abe received a couple rounds of IV antibiotics and IM antibiotic while the blood is being cultured. They culture his blood for 5 days, but we do get to go home sooner than this. We were able to meet with infection disease specialist who took some more tests for MRSA (staff) in his nose and bottom, in addition to retesting for the enterovirus that initially attacked his body to see if this has left him yet.
We have also received wonderful news, which was he does not seem to have an infection in his blood or urine, and his neutrophils (what fight infection and were dangerously low, resulting in isolation) are up to normal! We are elated to say the least. Tests are still out on the above mentioned virus and MRSA, but should be back in a couple days. So, not such a bad visit as we received good news, were able to follow up with hematology and infection disease specialists, and receive some good and strong antibiotics.
Hematology continues to believe that the virus is the cause of the cardiomyopathy. Still waiting on urine acid tests, which have us nervous. . .

Re: Large diapers

2007-08-17T18:15:00.000-07:00

Yes, as you can see in the previous pictures, Abram wears larger diapers than his actual size to catch all his extra pee! The medicine that he takes makes me shed a lot of urine and he goes through 17-20 diapers a day! That's the larger diapers with the extra absorbancy! Diapers, a binky, and socks are his wardrobe. It's just easier that way with all the changes, barf, and because he tends to sweat a little due to his heart disease.

A Surprise Visit From My Uncle Kyle

2007-08-17T17:36:00.000-07:00

A new toy - a mylar fish - to play with. Thanks Uncle Kyle!

2007-08-16T09:30:00.000-07:00

Today we collect urine. It was decided that we would capture Abe's urine at home rather than take him in to the lab to keep him from being exposed to anyone there. . . So it's my mother-in-law and me on a mission to catch Abe's urine in a baggie that literally sticks on him. I don't think it will be difficult, saw it done in the hospital. Much better than having him cathed to obtain urine and exposed to strangers with who knows what. The geneticist tech stated the acid 3-Methylglutaconic was not found elevated in Abe's urine and therefore they (the geneticist) are ruling out Barth's Syndrome. Even though this was not found in the urine, Abe could still have this acid elsewhere but the genticist refuses to do any further testing stating she needs it in his urine in order to go further with tests for Barth's. This is too bad because all the reading I do on Barth's and other disorders caused by abnormal amino acid levels do not consistently show themselves in urine, are more prominent in blood, and ultimately a chromosome test is the best proof. We have yet to see what comes with this, our pediatrician may go about this another way. Start with the urine and advocate for more if needed along the way. . .I'll let you know how the urine capture goes! Results take 2-3 weeks to get back.

2007-08-15T20:21:00.000-07:00

Abram's pediatrician called today, learned that he had an acid in his urine that is "abnormal". So we go tomorrow to give some urine for another test. Abe's pediatrician has been consulting with a geneticist who does not want to order chromosome tests yet that would check for genetic disorders.
Abe had a pretty good day, tired a lot but very alert when awake. One small episode of barfing due to a sore bottom from the wipes (chemical makes him red) and ended up vomiting a small amount, otherwise today was a no barf day!!! We are switching back to water on the bum, which we should have stayed with anyways.

Immunology Results - sort-of

2007-08-14T12:57:00.000-07:00

Received a call today with partial good news! Immunology believes that "overall tests are re-assurring" and Abram does not have an immune deficiency disorder that started at birth. It's all very confusing with what tests they have done, a total of 4 to tests Mitogens, Antigens, Natural Killer cells, and IGG. The tests show that Abram's mitogen function is good, these help to fight viral infections. The antigens did not replicate or respond in the study, but neither did the control sample so they are summing this up to be a "bad study" and basically throw out the results. The IGG was extremely elevated (tests check to see how well Abe's cells respond to tetanus, canida, etc., etc.) but expect this to be due to the immunoglobin he was given in the hospital (someone else's IGG could be spiking the numbers). And finally, the Natural Killer cell test was inconclusive because the person who could run this study was on vacation!!! (all tests were sent across the country, outside of Children's Mercy, this particular one to Nashville.)
So, needless to say Abram will need to give more blood in a couple weeks to re-do two of these tests. The IGG cannot be tested for about a year due to the donor immunoglobin in his system. What do these tests (inconclusive) mean for us? No rotavirus immunizations, no contact with people who have colds/flus/viruses/illnesses, etc., and wearing a mask at the doctor office. The doctor did not think that Abe's MRSA on his bottom was due to low neutrophils/immunity problems, but secondary (likely from the hospital) and still believes the enterovirus that was diagnosed, and the working theory of Abram's heart problem, could be driving his neutrohils to be low.

Culture results

2007-08-14T09:19:00.001-07:00

Received a call today about Abe's culture from his bottom where the two pimples were, and turns out they are a staff infection of the MRSA type. This is a "highly resistant" and "highly contagious" staff infection and can be very serious if in the blood or urine. However, as far as I know it is only on his bottom. He has been on Bactrim for 4 days now and they are much improved. I put a link for MRSA on the blog to the left if you'd like to read more.
Abe's pediatrician is doing some consulting with the geneticist at Children's Mercy to see what genetic tests were done as we had some question whether or not Barth's Syndrome was truly ruled out. It's likely we will request a genetic test to rule this out or in, if I remember correctly the doctors only looked at his blood and urine to rule this out and that is not always matter of fact when ruling out Barth's.
Our next appointment is Friday with our pediatrician to discuss furhter testing and follow up on the staff infection.

2007-08-12T17:53:00.000-07:00

2007-08-11T11:40:00.001-07:00

More pictures to come, working on uploading and importing. . .

Just because we love the hospital so...

2007-08-11T11:27:00.001-07:00

Another trip to urgent care this morning after two small bumps on Abe's upper fanny became more red and larger in size. He is now on bactrim antibiotic to treat what is likely a staff infection. Cultures were taken to make sure that it was nothing more than staff, and the doctor thought the antibiotic would take care of it in 10 days. Received blood tests from Friday's appointment and learned that Abe's neutrophils (a part of his white blood count that has always been too low) continues to be low, lower than when he was discharged at the hospital (was 300 and now 200, needs to be 1500+). So he continues to be extremely susceptible to infections, hence the staff infection probably. We will continue to limit visitors with sincere apology to all of you who want to come see him, but we must protect our little guy. He and I will remain under "isolation" in our home as we thought we might be able to go on an outting. An echo was done on Friday at the cardiology appointment and showed no difference - no better no worse- of his heart. The cardiologist explained the plan was to monitor Abram to make sure his heart can beat well enough for his growing body, and for now it is. Sometimes growth helps heal the heart, and sometimes it puts additional strain on it. So it's still a "wait and see". Cardiologist increased his medications for his new weight of 12.5 pounds (wowee!). The plan continues to go on a donor list if Abe's condition worsens, but due to his current stability if he were on the list it would be unlikely he would have a donor (compared to those in the hospital on constant medications and not able to go home who are first served, for good reason.) We have another appointment in 2 weeks with the cardiologist for another echo, etc., upcoming appointment with GI doctor, and likely another trip to urgent care that may be routine for our circumstances :). We plan to follow up with our pediatrician this week to tackle the cause of the low white blood count. . .or continue to blame it on this everlasting virus. My thought: test for the virus and if it's gone further testing for what is causing the low blood count. Will present this to the pediatrician.
Mom is here visiting and helping us get some rest and good food in us. Missing out on a family reunion which we are sad about, but not much of a choice to do otherwise.
Nothing more new. Until next time. . .

Dr. R, Here we come!

2007-08-08T13:09:00.001-07:00

It's official, we are keeping the doctor appointment for Friday. Abram will have an echo to see if he has had any changes of his heart. The doctor reassured me that changes for the better or worse can take a very long time and that it didn't sound like Abram was having any symptoms of cardiac failure so she doesn't think the echo will be significant. It will be significant for me to know that nothing has changed, and a bonus if it's at all better in any way. After the echo she will decide if Abe can start taking the bottle a couple times a day and start physical and occupational therapy. His heart has to be in a good place for these to start. I think she is doing the echo more for our anxiety as I told her that I need to have it done just so I know his heart is not getting worse. The doctor also said that there may be more medication changes if he is tolerating these meds ok, depending on the results of the echo. Abe will also have blood drawn to test his blood counts, keep your fingers crossed that his red and white blood cells are up!!!!
Abe's vomiting has decreased significantly since we stopped the formula Alimentum and returned to the Neocate. He had some pedialyte and that seemed to help a lot. He is feeling better, fever is gone, some residual diarrhea that I think will pass in time. We are now in a better place again :). That barfing every 3 hours is wearing on everyone and the washing machine!

2007-08-07T18:00:00.000-07:00

2007-08-07T17:48:00.000-07:00

Not much new here. Abram had a tough weekend as we tried to change his formula to a less expensive one. He vomited every feeding and is slowly recovering as he is back to his original formula. He does have a doctor appt scheduled for Friday to see the cardiologist however, the cardiologist may postpone the appt since they scheduled it at the wrong clinic way up north, and because Abram sounds like he is doing ok to her. She didn't think Abram's symptoms were related to any heart failure or cardiac distress and stated any changes for the better would not be seen this soon anyways. So it's likely it will be rescheduled for August 20. It's possible Abram has some kind of viral thing going on again as he has a temperature on and off, usually in the morning hours and then it goes away. He was in better spirits for the latter part of the day. I was looking forward to his appointment with the cardiologist as I had questions about what the plan is for us, knowing that it's a wait and see if Abram improves, and if he declines a heart transplant is in order. But I wonder what the plan is if he doesn't improve or decline. . . maybe more meds, I suppose.
Abram and I continue to be loners at home, some of the Drake's have come by and window peeked or stood from a distance as they are fearful of passing something along to Abram. Abram does better when he is held, does't throw up as much or as hard when he is laying on us so we are holding him all the time. I held Abram from 10:30 last night to noon today, my back and arms were killing me! Then we started him on some pedialyte after talking to the doctor and his stomach calmed down a little. But for the most part it seems like all we do is hold Abram. Mom is coming down this weekend and I am feeling relief already knowing there is going to be another holder around!

Am I glowing yet???

2007-08-04T21:00:00.000-07:00

Well, I realized it has been since Wednesday night that I had been outside of our home, with one exception of walking to the mail box and back two days ago. I will have to ask Bryan if I glow in the dark yet. I certainly have some glow as I am able to spend every waking moment with my son and that in it's self is a blessing. I don't really miss going out which surprises me a little. I think I am just enjoying every minute I am getting with Abram even though it is a lot of wakeful hours and tedious work. And, the outside world seems so dangerous to us right now. Taking care of Abram is definitely not hard work, what's hard is the emotional side of all of this. Keeping the focus away from where your mind really wants to wonder, that is, how things are going on inside our little guy and draw it's own conclusions.
Abram took about an ounce by the bottle today and I could tell it was so very taxing on his little body. He cried for more when I took the bottle out of his mouth for a breather, literally. His body began to sweat and he was breathing hard. I could feel his heart pound hard and irregular against my belly as he lay on me after drinking, drifting fastly asleep. He did his normal throw up this evening and morning, and we have yet to get this under control. Keeping in mind one step forward, two steps back is hard to do. At least he doesn't seem to be in pain when vomiting anymore.
Abram continues to have his playful and wakeful moments, a very happy little guy that will smile with you, loves to be talked to, will occasionally coo back, and likes to grasp on to his wrings and new soft mini books from his Aunt. He gushes over Mylar balloons and we have vowed to keep Mylars in our home at all times, he is fascinated with them and they bring him smiles and coos.
Bryan's family have taken good care of us, bringing us frozen meals for this next week to cook, mounds of diapers since we go through around 30 a day (it's the lasix), toys for Abram, and took Bryan to Costco and stocked us up on fresh produce, soap, and sanitizer by the bulk! Bryan was a happy guy!

2007-08-02T18:07:00.000-07:00

A BIG Thank you!

2007-08-02T11:03:00.001-07:00

Another thank you to all of you for your prayers and thoughts, and offering meals and your time to sit with Abram to allow us a break. We are so blessed to have all of you and our families who have been making sure we are being taken care of at this time, but likely will take you up on your offers in the future! Unfortunately, we are having to limit Abe's visitors to grandparents and immediate family due to his low blood count which makes him suseptible to bacteria and viruses, and wouldn't be able to fight them off. Thank you so much for your generosity!!!

Another hospital run. . .just for the fun of it!

2007-08-02T10:44:00.000-07:00

Another hectic day Wednesday was...I spent the majority of my time on the phone to schedule home health for weight/vital checks and possibly labs, ordering a powerful nasal aspirator, and calling the pharmacy about Abe's Captopril as it was going awfully fast and I had the sinking suspicion that I was administering it to him incorrectly. What an awful feeling. So, I called the pharmacy and they initially said they did not give me enough, only to call back 5 minutes later to say the pharmacist who mixed it made it too strong! He was vague and wouldn't say how much, but obtained Abe's doctor information and of course I called our pediatrician too. I have been given Abram his Captopril at the "too strong" strength for a week now and our pediatrician told us to go to urgent care to make sure Abram was ok. This medication can affect his blood pressures, making them go lower and electrolytes which would lead to increased renal failure and kidney problems. We spent 3 hours at Children's Mercy Urgent Care, and another prick of the needle on Abram to find out that his BUN was a bit elevated, in addition to some other numbers (creatnine) but not elevated enough for hospital intervention. What a relief that was. Apparently the medication was 3x the strength it should have been. So, needless to say Abram is ok but we could have done without all of that! And then to learn that pharmacy charged us and our insurance for the new bottle of medication of the correct strength (my husband was the purchaser - believe me, I would have had words right then!) so I think a letter is in store for Walgreens :), with a request to pay for our hospital trip. Not even did they ever offer an apology!
Other than being tired we are doing ok. Abram hsa been sleeping more these last couple days, and bit more cranky but I think his days are going to be inconsistent and dependent upon how he feels. He's in his bouncer cooing away and talking to the itsy bitsy spider toy that hangs in front of him. He loves his bouncer, but this is a first that he has been interested in the actual toys that connect to it. He remains pink and has gained a few grams - a whopping 11.99 pounds he is! without the "normal" amount of muscle tone he is to have, he's even more fun to cuddle with. As his Aunt says, he is "squishy" and he is fun to squish!

Monday

2007-07-30T17:42:00.000-07:00

Today went rather smoothly, I took a lot of naps and thought about how much I would like to be cleaning my home. Sleep vs. Clean - a tough battle, so I did a lot of sleeping and little bit of cleaning, telling myself I will get it all done one of these days.
Abe has been very vibrant and full of pep and I wonder sometimes if he shouldn't be more tired. It's wonderful to have him be a little more energetic, or I should say he is A LOT more energetic. I hope that's a sign of his heart on the mend, and that he is reserving some of those calories rather than working them all off! I imagine he fees pretty good after feeling so awful for as long as he did, I can equate it to when I have been ill with the flu and recover. . . it feels like a new life. Abram is kicking both legs, even higher than what Bryan and I have ever seen him do. Waving his arms back and forth all the time, and continually knocking himself in the head/eyes as he doesn't have a lot of control yet. Coos are becoming louder, and still smiling frequently. Sometimes I forget he is such a sick little guy with all of his pep and color. I find myself neurotically looking at him wondering if he is becoming more pale or modeled like he was in the hospital. I look back at pictures of Abram and wonder why we didn't see how pale he had become before he went into the hospital. Hindsight is 20/20, not fair.
Yesterday Abe pulled out his entire feeding tube without Bryan or I noticing! We both looked at him, and I noticed something looked different as I didn't get it right away. . .then realized, he was holding his entire tube in his hand. I replaced the tube without problem, getting pretty good at it as this is the fourth time he's needed it to be replaced. Feeds went rather well today with one vomit this morning. Abe's Aunt Laura is bringing dinner tonight from Cheeseburger in Paradise - my diet has definitely gone out the window and the new work out DVD is collecting dust. More important people to tend to at this time :).

We are finally home!

2007-07-29T17:04:00.000-07:00

It's been a challenging couple of days getting home with new routines after spending two weeks with Abram at Children's Mercy. Abram received countless tests to rule out/in metabolic, genetic, immune deficiency, and blood disorders. Although some tests are still outstanding, the doctors are leaning towards the cause of our son's dilated cardiomyopathy as a virus that attacked his heart, the enterovirus matter of fact. What I have learned is that this virus is very common, second to the common cold virus (rhino virus), usually causes meningitis in addition to cardiomyopathy in SOME babies, but somehow Abram was not affected with meningitis. Other babies can fight off the virus completely. In Abram's case, it's likely his immunity was jeopardized due to his decreased nutrition by acid reflux. Apparently there is no rhyme or reason that some babies are affected and others are not, unless there is another underlying condition/syndrome. We were told there was a possibility of Abram having a syndrome called Barth's Syndrome, however, several of the tests for this tested negatively. To be sure that he does not have this would take a genetic test and it seems to me if I remember correctly the geneticist that was working on Abram's case did not think it would be helpful to run this test since all other tests pointed away from this. THANK GOD. Learning about this syndrome scared both Bryan and I, and I know for me it still is in the back of my mind looming about. So, I guess we only think we know what caused Abe's heart problem. Not knowing certainly weighs heavily on me.
On the other hand, we are finally home. Despite constantly keeping notes of when we filled the pump to feed Abram, to when we last gave him his many medications, at least we can say we are doing it all at home.

In Dedication

2007-07-29T16:55:00.000-07:00

It has been a scary couple weeks for me and my family, and decided that I would write about it for the reasons of my own personal therapy and to allow friends and family a place to learn about Abram. And so, this blog is dedicated to our new son, Abram.

Despite the pain of our situation, it has been comforting to know of all the prayers and thoughts coming our way and I thiank all of our friends and family for these. I would love to return my thoughts to each and everyone of you in personal emails/phone calls, however, Abram is requiring heavy duty care and my time and energy are limited. So, upfront, I apologize for the way in which I have chosen to keep you updated, but hope that you will find it comforting to know there's a place to find out what's going on with us, if you so do wish. Thank you for all of the thoughts, prayers, and support - and please keep them coming!