The Chubster

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?

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!

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.

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

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)

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

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

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

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.

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

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

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.

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

Just because we love the hospital so...

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!

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!

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???

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!

A BIG Thank you!

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!

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!