Wednesday, August 31, 2011
Sunday, August 28, 2011
Saturday, August 27, 2011
oh, and this:
Insane, right? Sorry for the dark pics. I'm not a great photographer and it was early morning...and our kitchen is just plain dark! My husband stayed up until 4:30 a.m. installing new plumbing, a water line, a new gas line and fixing a plug so that I could wake up on my birthday to these space-age new appliances in my kitchen. He is so good to me. I won't even scare you with the pictures of our old ones. I'm afraid someone would call social services because of the amount of broken shards of glass from our cooktop that sat there for months and exposed electrical wiring of our dishwasher all just begging for an accident to happen. I feel so spoiled now. We got amazing deals (like 80% of for the refrigerator and 60% off the other appliances) because of a few scratches. And I got a completely unexpected amazing awesome birthday morning playing with all my new machines! All I had asked for was a few books and maybe some money for new underwear :)
John Paul had been sad because he had really wanted to bake me a cake for my birthday and once the oven died, it wasn't going to happen. I have never baked a cake for my own birthday but when your sweet little boy needs help baking you a birthday cake AND you get to inaugurate your brand new fancy oven, I happily obliged. I got this recipe through Charlotte who got it from here. It is absolutely decadent and delicious. I left out a full cup of sugar and it was still sweet enough for us! I subbed in carob powder for the cocoa and left off the chocolate glaze because apparently any amount of chocolate during pregnancy and my body decides it doesn't need to sleep for hours at a time that night. The carob seems to be a great caffeine-free substitute!
I didn't even frost the sides because I could tell from some little taste tests that it would be perfectly fine as is and might be a bit overload with any more of that peanut butter frosting! And now I have some extra frosting waiting in my new freezer for some perfect late night craving creation...
The boys also spent a long time working on something in the library and I was NOT allowed to go in. My mom stopped by to bring me some wonderful gifts (a new Fulton Sheen book, a bathrobe, AND she ordered me a Liturgy of the Hours book that I need - thank you, Mom!). During that time, John Paul brought out this:
"It's to hold your knitting." He had sewn a felt bag completely on his own so that I could have a place to store my current knitting project!
Michael then came over after working very very hard on something and handed me this:
"It's a black-eyed susan because you love black-eyed susans." Oh, sweetheart, I do. I very much do.
And now today, again, I am feeling completely and totally spoiled and in love.
Wednesday, August 24, 2011
Monday, August 22, 2011
Thursday, August 18, 2011
Picking up where I left off, we scheduled the biopsy to look for evidence of Hirschsprung's Disease for June 8 and I tried not to think about it too much beforehand. The procedure involves scraping a very tiny piece of tissue from the colon that is then tested for the presence or absence of ganglion cells. Ganglion cells are nerve cells in the intestines responsible for moving things along. Hirschsprung's Disease is the result of a person not developing ganglion cells in part of or all of their large intestine. If ganglion cells are present, the patient likely does not have Hirschsprung's. If not, then the patient is determined to have Hirschsprung's or needs to be tested further.
The necessity of sedation during the biopsy made things a bit more complicated. The procedure itself is only 15 minutes and painless but with the anesthesia needed for it to happen, it was an all morning event. No food past midnight (no nursing past 2 a.m.), a long wait in the GI surgical suite, the procedure itself, wake-up, and then recovery. I have to say the staff on this floor on this day were wonderful. It was so comforting that Brian and I could hold David, walk him into the surgery room ourselves, and be right at David's side while they gave him the anesthesia and then he was out. I will admit it is an incredibly horrible feeling to watch your precious little one's eyes roll back as the gas works and seeing firsthand how powerful medicine can be (and yes, I did burst into tears as we left the room), but I would MUCH rather be there with him, experiencing it with him and reassuring him, than not. We were allowed to wait right outside where the biopsy took place and as soon as they were done, they wheeled him out and we could see him and sit with him. The recovery nurse was wonderful and as soon as David began to stir a little bit later, I picked him up and nursed him. The wake-up was vastly different than what they had prepared me for...screaming, thrashing, etc. I am sure that was because we were right there and I could nurse him and comfort him immediately. Once he was fully awake, they checked him quickly and we were able to leave. From the time he was done with the biopsy, it was only about an hour until we left the hospital.
About 2 weeks later, we FINALLY got our appointment for the follow-up and results. Why they can't or won't tell you these things over the phone is maddening! When the doctor finally came in, he gave us the verdict: David's biopsy showed no ganglion cells and therefore it was suspected that he had Hirschsprung's. Silly as it sounds, I was not ready for that. Everyone had made it sound like it was so unlikely and I was the one who was pushing for the test but still it took me by surprise. The satisfaction of proving a mother's intuition right was lost for the realization that this was a big deal. This wasn't just something we could ignore and hope would correct itself on its own. The doctor gave us the names of some of the surgeons at Children's Hospital and I was told I needed to call and schedule a consult and a full-thickness biopsy to confirm the Hirschsprung's diagnosis. I left the office, cried a bit and then started to figure out with Brian what the plan would be.
We met with Dr. Glick at Children's Hospital in Buffalo. We talked to an intern for a while who took our history and checked David (we didn't even know if it was Dr. Glick at the time...they're much too busy to fool around with things like introductions and such ;) Dr. Glick came into the room and asked us some brief questions. He was quite certain that David was "just constipated like 98% of the other kids who are sent to me for Hirschsprung's". This was with the positive biopsy results in his file. We were told we needed to schedule David for a barium enema and then the full-thickness biopsy. I was prepared for him to not have the greatest bedside manner because the referring doctor had warned of us of such, but it was still startling to see how rushed we were with our questions and we left after scheduling those tests, unsure of what in the world was even going to be done during those tests.
The barium enema was a week or so later. I was incredibly nervous. I knew I couldn't be in the room for the xrays and learned that morning that they would take about 10 minutes to complete. I didn't know if I could handle him being strapped to the table while they inserted the barium and took the pictures that they needed. Thank God for several wonderful technicians who were so good with him. I waited right outside the room and could hear them talking with him and working with him and he didn't cry once. I had prepared him beforehand as best you can a two year old. I told him how they would be taking pictures of his tummy and that he would get to lay on the table and see the big camera, etc. I know it wasn't an enjoyable experience for him, but thanks be to God, it was so much better than I thought. We were able to go home soon after.
The next biopsy was scheduled for July 7. We felt like this would be pretty similar to the first biopsy. After all, they were basically doing the same thing, just taking a slightly larger and deeper sample to test for Ganglion cells. We had to do the fast again and this time we couldn't get him scheduled until noon. Noon. Because apparently that was when our doctor got the O.R. We had to go to the surgical floor this time because we were now working with the resident surgeon. The wait was long and hard but thankfully, the surgical suite waiting room is well stocked with lots of toys. The process was more complicated than the last time...first see this nurse, then get your gown on, back to the waiting room, come see this nurse, now you can come downstairs to the holding room, now talk to the anesthesiologist, etc. Once we were down in the holding room, things got very difficult very fast. I tried like the time before to make sure I could be there right when David woke and that I could nurse him right away. The surgeon laughed at me and said "that's not going to happen here." The anesthesiologist began talking about his breathing tube...wait? breathing tube? For a 15 minute procedure? The surgeon then told us it would be longer than that (despite what we had been told previously). The anesthesiologist told us that he would do 'his best' to do the least amount of anesthesia necessary. We weren't convinced. Dr. Glick told us that "everyone gets treated the same here. If we don't, then we make mistakes." Really? So, you don't look at the patient and his or her needs...you treat the child having major heart surgery the same way you treat the baby going in for a simple biopsy. That is incedibly logical, right? Dr. Glick was so incredibly callous that I was in tears. I think the one medical student felt sorry for me and she came back to check on how we were doing. I asked her to never become like him. That whole waiting time is now just a painful blur on that difficult day. They took David away and he wasn't thrilled but he wasn't too upset either. The idea of him being with strangers who would then have to put him under and I couldn't be there to reassure him was killing me. The wait felt like forever. I was in tears for much of it and paced for the rest. After about half an hour or so, Dr. Glick came back out and said everything went fine and that he should be waking in a few minutes. He explained a bit about what to expect and went into a little bit about his barium enema results. Apparently, his whole colon was very distended from dealing with the Hirschsprung's for so long. It was so hard to concentrate when all I wanted to do was run throught those ugly surgical doors and hold my baby.
Dr. Glick left us and we waited for the okay that David was waking and that we could come see him. And we waited. About 15 minutes later the two students came out and said that it should just be a little bit. So we waited some more. A full hour after we spoke to Dr. Glick, STILL no one had come to get us. I was more than nervous. Brian finally went in and asked about David and suddenly it was just a few minutes and Brian was able to go see him. We switched off a few minutes later and I could finally go in and hold my little boy. He was so groggy and his throat was so scratchy. Apparently, they had put in the breathing tube, despite it not being at all necessary. He just wanted to keep sleeping (after all, not only had he just had anesthesia, it was his normal nap time!) but we needed him awake to make sure that all was okay and so we could bring him upstairs and ultimately home. I held him and tried to help him stay awake while gently pleading with the nurse to send us upstairs. During that time, she casually mentioned how she had administered some morphine to him. WHAT? The doctor had assured me that this procedure would cause no pain (there are no pain nerve cells in the intestines). The only thing that could have been bothering him was the scratchy throat caused by the unnecessary breathing tube...but even that certainly wasn't worthy of MORPHINE. Her response was "well, I read that he had a full-thickness biopsy and that sounds like it could be painful, so I gave him some morphine." REALLY?? So he wasn't really in pain, you just THOUGHT he might possibly be so you gave him a powerful drug?? No wonder the poor kid couldn't keep his eyes open. I was livid that we were not even asked about that and the helplessness of having others make huge (to us) decisions was so frustrating.
Thankfully, we were sent upstairs soon and I just carried my little boy in my arms. It took a while and several nurses checking him but FINALLY we were able to get the go-ahead to get him dressed and take him home. It was such an exhausting and horrible day and all we wanted was to be home. I can't even imagine if he had been there for more serious reasons and I thank God that we were able to get out of there when we did, despite the fact that it was hours after we were expecting to leave. There were certainly many parents and children there dealing with things far greater than we were. We scooped up our baby and got out of there as quickly as we could, picking up the older boys on the way home (and yes, that involved me bursting into tears when I saw my sister who had been watching them for me). David perked up a bit that evening but was ready for bed early. His throat stayed scratchy through the night and for much of the next day but other than that, he was just fine from then on.
We made the follow-up appointment for the next week, assured by Dr. Glick that the results would be in by then. They were and Dr. Glick came in and told us that yes, again the biopsy had revealed no ganglion cells and therefore, David did have Hirschsprung's Disease. He told us that he would like to try to handle this a bit differently than normal. His idea was that if David had short segment Hirschsprung's then possibly his body would respond to easier treatment. This would involve botox injections around his sphincter. If that relaxed him enough to be able to go on his own, then Dr. Glick would perform a sphincterotomy, basically a cut in the sphincter muscle. The botox trial would last about three months and would need to be repeated just to be certain. He also said that despite the fact that injecting the botox would only take about five minutes, we would need to go through the whole surgical suite process through the hospital. ("Because I need my lights". Of course.) He didn't describe the sphincterotomy too much and we left knowing that we had a lot to research and think about before making any decisions. He did schedule us to come in to learn how to do bowel irrigations. Apparently this is pretty standard for Hirschsprung's children and is done on a daily (or more) basis to (supposedly) lessen the risk for colitis and keep them cleaned out.
Brian and I left the appointment and spent the next week or so learning about the various methods of treating Hirschsprung's. I knew I wanted a second opinion and to see another surgeon. There was no way I could deal with Dr. Glick being responsible for my little boy unless it was absolutely necessary. And I wasn't so sure about the process he was encouraging to treat David. Brian and I learned about the standard treatment for Hirschsprung's which is pull-through surgery. The affected part of the colon is removed and the healthy part is reattached in the hopes that the child will then be able to function normally. I felt lost and tried the best I could to find other options for his care. We debated between Strong in Rochester, Pittsburgh and Cleveland, the places near us that were known for pediatric surgery. We eventually were led by our pediatrician to try Strong Hospital in Rochester, NY and she gave us the name for Dr. Pegoli, the chair of general pediatric surgery for the hospital. I made an appointment there and we waited to see what his thoughts would be.
Wow...have to stop again. This is so much longer than I thought it would be but I will continue on soon with the third (and hopefully last) part of this story of ours! Pin It
Monday, August 15, 2011
Friday, August 12, 2011
Wednesday, August 10, 2011
Tuesday, August 9, 2011
Monday, August 8, 2011
Tuesday, August 2, 2011
David's birth was perfect. He was born at home, in the water, into his Papa's arms after an intense five hour labor. There were candles and it was the middle of the night and it was just so beautiful. I couldn't have asked for better. Everything seemed normal. He nursed right away and then was really sleepy for the next day or so. It seemed fine, we kept him warm laying directly on me because his temperature was a bit low. We were starting to get a little worried when he didn't have his first bowel movement. It was right around the 24 hour mark that he did and we thought all was fine. We just attributed it to the fact that he hadn't nursed much and his system was moving slowly. He perked up and acted like a completely normal brand new baby. For the next four months, everything seemed fine, aside from the fact that he was a pretty high-needs baby. I really really thought he was going to be my "easy" one and I was very wrong! But health-wise, he seemed okay, though I did go through some elimination diets to see if that would help him be a bit more content.
Fast forward to about four or five months old. He started going longer and longer between bowel movements. This can be completely normal for an exclusively breastfed baby. Breastmilk is so easily digested and such a complete food that often there is little 'wasted'. Everything I read said that it can be normal for such babies to go two weeks without a bowel movement. When he did go, it was not a normal breastfed diaper and we would have to 'help' him push it out. I started researching during this time to try and figure out what was going on. I knew it wasn't normal but the doctor was so unfamiliar with normal breastfeeding (almost all are, it seems) and the only advice people could give me was to try prune juice or corn syrup. That wouldn't solve the underlying problem of why an exclusively breastfed baby could be constipated and I didn't want to complicate things further. I did eventually try the prune juice (are there babies that will actually drink that??) and nothing. The only thing I could find online was that constipation in an exclusively breastfed baby was not normal and that it was a sign that something was wrong...either a strange reaction to something mom is eating, possible lead poisoning, botulism, or Hirschsprung's Disease.
I took myself off of wheat and dairy and did several different diets to see if that would help. I was pretty confident that botulism wasn't a factor and while I supposed that lead could be possible, it didn't explain why he was normal for four months and he wasn't drinking our water (or ingesting paint) anyway. Hirschsprung's didn't seem likely since (the sites said) most babies are diagnosed within days of birth and don't appear normal like David had. And then at maybe six or seven months, two weeks passed. And then we noticed his that his little tummy was getting harder and more distended. I took him to the doctor. The doctor could immediately tell that he needed to go and needed to go soon. He was pretty impacted and if he didn't go soon with the help of a suppository, the doctor advised us to take him to the emergency room. That was scary. The suppository did finally work that evening for my poor little guy. The doctor had no help as to why this was happening. I brought up Hirschsprung's and he waved it off saying it wasn't possible.
From that time on, I kept hoping something would click and he would begin to go on his own. But he didn't. He began to need outside help to have any sort of bowel movement. Of course, I worried that we were just making the problem worse and prolonging it by using the suppositories (you know how medicine packages always say 'do not use for more than x amount of time without consulting a doctor'? Well, our doctor seemed just fine with it). I was repeatedly assured that this was not likely and that he had likely 'trained' himself to not go and that if we got him on a consistent routine, he would eventually pick it up and everything would be fine. This seemed strange to me that a child as young as he was would do that but we needed to do something and we had no other answers at the time.
I looked more into Hirschsprung's and learned that it was often a hereditary disease. This actually turned a lightbulb on for me. When Brian was born he had to have emergency surgery for necrotizing enterocolitis when he was a day old. The details had always been fuzzy to him and the most he knew at this time was that his intestines had somehow formed into a "gangrenous mass" in utero and that it was impossible for him to have a bowel movement, necessitating emergency surgery. His parents were told that it was a strange birth defect and that it wasn't something that could happen again. They eventually removed a good portion of his intestines and he spent his first three months as a baby in the hospital. We began to wonder if something had been lost in translation (HD deals with the lack of ganglion cells...perhaps gangrenous was in fact, something to do with ganglion or something?) or if the doctors that had taken care of Brian could possibly have not been familiar enough with the details of Hirschsprung's and that maybe that was part of what Brian had suffered from at birth. We've since learned that what Brian had was definitely different than HD and that supposedly they are not related, though I am not convinced that these 2 rare (but similar) conditions could happen in father and son without it somehow being related...but I could be very wrong. I am blessed that Brian's condition forced me to look deeper into HD, and the more I read, the more it did seem like it was a good possibility that David could have this, if only a 'small segment' case that was not as extensive as other babies, hence the later show.
I again took him to the doctor during this time and saw another member of the practice, hoping that maybe she would have some more help. "Have you tried prune juice?" That was the extent of her help and she assured me that it was 'impossible' that he had Hirschsprung's. It was shortly after this time that David lost his health insurance coverage. There was no way we could afford to continue to investigate with doctors, let alone afford the tests for Hirschsprung's, especially since it seemed so unlikely. We entered into a strange new 'normal' for us. I tried lots of various rememdies, none of which worked. We continued to have to help him go every one to two days to ensure things didn't get really bad. It's embarassing to admit that this became our normal and we kept just hoping that things would click and that if it was behavioral, that he would eventually be able to go on his own, and if not, that we would find some sort of remedy that worked. We had no choice really at this point, save going into serious debt over what was deemed an impossibility by our doctors so we prayed and trusted that God would take care of David and help us.
Shortly before his second birthday, Brian was finally able to get us all on a family health insurance plan. Being a small business owner is really difficult when it comes to health insurance and it is very costly. He was able to get a plan that required no referral for specialist visits! I made an appointment as soon as possible for the local pediatric gastroenterologist specialty clinic that works through the local children's hospital. This practice is The Place in the area to go to with this kind of thing. We finally got an appointment. At the appointment, they were sure it was a learned behavior, despite the fact that it started at such a young age. It's hard at these appointments when the 'experts' don't know YOU. I'm sure there are many parents who would take their child into a specialist for some minor, food-related constipation. Or who don't know how to deal with a child that is refusing to go. But this isn't us. The medical community doesn't have much room for
'mother's intuition' and it's a humbling experience when you get lectured on your child's weight rather than on the REAL issue at hand. She gave us a prescription that would help him go without the suppository, clean him out,and ordered an x-ray to make sure there was nothing blocking him and that his intestinal shape was normal. The doctor was quite certain that it was not Hirschsprung's but that "if it would make me feel better", she could order the biopsy. I took her up on it.