Tuesday, January 31, 2012
I feel like I'm a bundle of raw emotion. Fear, frustration, anger, impatience all swirl around inside of me each and every day.
Many of you have read on Facebook that we are at home, again.
No, Xander is not better eating wise. In fact, a reasonable argument could be made that he is actually in a worse condition than before.
We are continuing his antibiotic for the C.diff. He is still only drinking pedialyte and will only eat applesauce, rice and bananas with an occasional pretzel or saltine cracker. This is the same thing he ate for days in the hospital. And somehow this is considered a plan.
I'm not happy that we lost ALL the foods he would eat during this last hospital stay.
I'm not happy that this is considered suitable to the attending to come home eating only these things.
I'm not happy that our gastroenterology consult never took place while we were inpatient.
I'm not happy that my conversation with the nutritionist ended today with her sighing and saying "Perhaps we will have to just do a nasal gastric tube."
I want to scream loudly that I don't want another bandaid. I want my baby to be better. I want the ROOT of the issue to be found. I want him to have normalcy and be able to eat whatever his little heart desires.
And I don't have any of that.
Only one expectation that was set for our stay at DuPont was met. He was treated for C. Diff.
We never met with the complex cases team. Yesterday when we left we were told that appointment would be Monday after gastro. Today we were told it is in March.
This coming Monday, we are returning to DuPont hesitatingly to see the gastro department and then nutrition. I fasted during breakfast and lunch today, praying for God to help me. Somehow I have to muster the strength to deal with people that have left us in a worse situation than before food-wise and people that refused to see us as inpatients.
Lord, give me tact and supernatural ability to deal with this on Monday.
Sunday, January 29, 2012
Interestingly, he isn't laying in bed all day and isn't expected to. He is not allowed to leave his room, but if he wasn't contagious he could leave his room and go to the Child Life room where there are toys and activities for the children.
Xander spends most of his day snuggled in the recliner with either Brandon or I watching TV. He has been brought some toys by the Child Life Department, so he plays too.
He's not been poked since he was in the ER. They drew blood there and put in a heplock in case he needed an IV, but we lost that line on Monday afternoon. So far, we have been blessed to keep him hydrated enough with sprite and pedialyte although there have been moments that it looked like we were headed down the IV road.
The prodding he takes like a champ. The one thing he hates is having his temperature taken under his arm. He willingly allows them to take his blood pressure, listen to his heart, chest and belly sounds and even feel his tummy. How long he tolerates them pressing on his tummy is dependent on how distended his tummy is, of course.
The staff here is fabulous and understand that he is a child, not a tiny adult. For instance, when he was triaged in the ER, the nurse did the entire exam with Brandon standing and holding Xander. Many exams have taken place in our arms, or snuggled in the recliner.
Why didn't you guys go to DC National? It would have been a closer commute for Brandon.
Honestly, we hadn't heard much about DC National. I'm sure lots of people have had a positive experience there, but we also wondered if it was "too close" and if they would just consult the gastro that refused to treat our son. So instead we are 3.5 hours away from home at DuPont.
How did you choose DuPont?
It was the next closest Children's Hospital to us. I also have two friends that highly recommended it, as they have come here with their children. CHOP (Children's Hospital of Philadelphia) is about 30 minutes further than here.
Why didn't you go back to Augusta? Your children are there.
They are there, and they are being well cared for. But it is also 8+ hours from home, and Brandon wouldn't have the ability to go back and forth between work and the hospital. Also, we were concerned we couldn't make it all the way there, in the condition that Xander was in on Thursday night.
How long do you expect to be in the hospital?
No one can answer that yet. Xander is already showing improvement from the cdiff. But, as that clears up, we are going to attempt to address his chronic diarrhea and lack of growth. At the very least we need him to be eating a better diet than what he currently is willing to eat. For example: His current diet is terribly deficient in a variety of vitamins and protein. He is also very low in Vitamin D, so that will need addressed.Are all of his issues due to the Cdiff? / Great! Now you finally have an answer!
No, all of his issues are not attributed to the Cdiff. Our doctor's best guess is that Cdiff has only been an issue since this past Wednesday and does nothing to explain his lack of growth since June, the chronic diarrhea, food reactions or the previous weight loss so we only have an answer for the acute issues, not the chronic ones.
Did he get Cdiff because of antibiotic use?
Not likely. He's only had antibiotics twice in his life. Once when he was a very small baby due to an ear infection. And again this past October for fluid in his ears. Most of the time we don't use antibiotics for fluid (our doctor's preference), but we were headed out of town for vacation and after we didn't see improvement we went ahead and got the antibiotic called in. According to Dr. Swami, if the antibiotics caused the cdiff, then it should have showed up within 3 weeks. This can be caused by overuse of antibiotics though this doesn't seem to be the cause for Xander.
Instead, our doctor has told us that some people naturally carry Cdiff in their GI tract. Everyone has good and bad bacteria in their GI tract. He thinks that because his GI system was so out of whack, it provided an opportunity for the bad bacteria (cdiff) to take over. In the case of antibiotic use causing Cdiff, the antibiotics kill off the good bacteria, allowing the cdiff bacteria to take over.
Of course, Cdiff is also highly contagious, so there is a possibility that he was infected at the previous hospital. We will most likely not know.
Why are you seeing genetics? I thought this was a gastro issue.
We were originally scheduled to see genetics in Richmond to follow up on the neurofibromatosis work up. We missed that appointment because we were in the hospital. But when the emergency room doctor here heard the whole history, she wondered if maybe, just maybe, a genetic issue or syndrome can tie all of his issues neatly in a bow. The issues include: vitamin D shortage, the diarrhea, the lack of growth heightwise, the losing weight/not gaining, the high TSH, the birthmarks, the fact that he rarely has tears and doesn't seem to sweat at all. He also had a small blood vessel anomaly mentioned in his MRI radiology report and has a small mass in his stomach. She just thought there are too many things "off" and they seem to be spread over several of his systems. She is curious if they are all related.
I have one more thing I'd like to address. It has been hinted around by various people that this is a downfall of adoption. That we didn't know what we were getting into. Or if we would have known, perhaps we wouldn't have matched with him.
Brandon and I have learned that even with biological children, you have no idea what you are getting into, even healthwise. Our girls have their orthopedic issues. Julianne had respiratory issues as a baby. Health is NOT guaranteed even for biological children.
Even if we knew about Xander's issues beforehand, it wouldn't have made a difference. If you recall, we adopted him knowing that his birth circumstances were less than ideal. We knew that his birthmom's health history was questionable. Also, we thoroughly understood Annalise's issues and we were willing to make that walk as well.
Adopting Xander was NOT a mistake. We have ZERO regrets and we can't imagine our lives without this little guy. He has taught us so much and I can't wait to see what other lessons we will learn through raising him and watching him grow.
Nothing makes me turn into a ferocious mama bear quicker, than to suggest that adopting Xander was a mistake, or using this as a case against adoption. Adoption is beautiful and we are so blessed to have Xander in our lives. We can't imagine our lives without him. We committed to him in April of 2009 and that commitment stands. I will always be his mama, always love him and always fight for him in every way I can. Nothing can change that... ever.
Saturday, January 28, 2012
It was sad saying "See ya later" to Brandon (I have a thing against Goodbyes) and for a little while after he left I felt like I was going to burst into tears at any moment. But I had little Xander to keep me busy.
This morning Xander fought hard to be perky. It wasn't his true perky self but you can tell that he wants to feel better so badly! He ate breakfast and then we snuggled and watched some movies (Toy Story 3 and Shrek.)
True to his hospital routine he fell asleep about 11:30. Dr. Swami came by right after Xander fell asleep and we discussed his progress. Some Cdiff is Flagyl resistant but since he is starting to show an improvement, Dr. Swami doesn't think we will have any issues with that.
After I spoke with Dr. Swami, I used naptime to take the opportunity to go down to the cafeteria. I've gained a sense of direction here.. FINALLY! Yesterday I was so overwhelmed with coming to the floor that I couldn't remember how to go to get to anything.
Xander's nap didn't last long though and he was very irritable for the rest of the afternoon. For lunch he would only eat saltine crackers and drink sprite.
We had a nutrition consult and she was rather stumped after listening to Xander's history. Right now we can't do much because the cdiff has muddied the waters so much. For now we are letting him eat what he wants (within reason) using small frequent meals. We are avoiding milk, soy and eggs again. Dr. Swami thinks that his tummy was so distended at admittance because of the eggs and pancakes he had the breakfast before (at the old hospital.) We are going to try to see if he will take Elecare Junior Vanilla. I'm not very hopeful but I'm willing to try! She said Elecare Jr. Vanilla is the best tasting one so we will start there tomorrow. He will still be on table foods but she is hoping to increase his caloric intake and get him some better rounded nutrition.
The nutritionist also spoke with me about a diagnostic complex issue team that she thinks we should see. Apparently, they are a group of doctors that are very good about taking strange pieces and figuring out the puzzle. We were originally supposed to be with that team, but they had a high number of patients the day that we were assigned our group so they chose Dr. Swami since he does infectious diseases and cdiff is one. The nutritionist was pleased that we are having a genetics consult on Monday. She said we will get back together and make a plan once cdiff gets better.
For dinner, Xander ate plain white rice. Then I gave him a bath and a massage with lavender lotion. I put him into a fresh gown and shortly after he fell asleep in my arms.
Another day down and we are headed in the right direction.
Thank you, Lord!
PS: I'm planning on doing a question/answer post in the next few days. If you have a question, feel free to ask.
Friday, January 27, 2012
The diarrhea continued and then the vomiting came. His bottom is raw again and we have a special concoction from the wound care team here at DuPont that seems to help more than anything we have ever tried.
About 7:30 the attending came in and we spoke at length. He was fabulous and explained things thoroughly without making us seem like morons. We asked if he had been positive when we were in Richmond. He believes that the soonest the cdiff started was the day he vomited whole food at 4am on Wednesday.
He told us that this hospital has a newer test that they have been running since August and that the other lab test may not have picked it up, without doing anything really wrong. We are blessed to be at a cutting edge hospital.
Our doctor also is part of the infectious diseases team here so he really knows his cdiff. (A blessing from the Lord!) For now, we are treating Cdiff. He vomited tonight, but the flagyl had been down long enough to "count." He will get the flagyl four times a day (every six hours.) As the cdiff clears we will look at his symptoms and go from there.
Brandon leaves for Richmond at 1 am to go to work. :( But he is returning Sunday night. This weekend will be easy foods, antibiotics and watching for dehydration.
His partner takes his cases on Sunday night and he says she is just fabulous. I feel better informed and less stressed and overwhelmed. I also got a few hours of sleep. We've cried many tears of relief.
I nearly lost it when the doctor told us that this could have killed our Xander if it was left untreated. Thank the Lord that I ask every morning for Him to guide me and give me insights. I firmly believe that He placed a huge knot in my tummy when we left the hospital on Thursday night. I felt a wild panic unlike anything I have ever felt before and just knew that I had to do everything in my power to have someone treat him.
I'm so thankful that Brandon and I have the kind of relationship that I can say, "This is my gut feeling.." and he is willing to listen. But make no mistake, Brandon wasn't skipping out of the hospital in Richmond. I'm just a little less patient when I think things aren't going right. Some call that a fault, but in this case, it was a gift-- a gift that may have changed our course and made it where I can watch Xander grow into a strong man. Thank you, Jesus!
Monday genetics will come visit. They will try to piece together his birthmarks and some of the other odd things that we have noticed. Maybe this can all be tied together with an explanation from genetics. The thought of that is a little scary, I admit, but I know that God has always been by my side, even when I wasn't open to His direction and He will continue to walk with us. His love for Xander is so evident when we look at Xander's life and I know that He isn't leaving us on Sunday night to go into that genetics consult alone. I can't borrow trouble at this point, we have enough going on already.
Several of you have asked about the other three children. They are in Augusta, Georgia with my aunt and are pleased as punch to get to spend time with her. Julianne and Lainey (and mommy too) have been rallying for Auntie Karon to move to Virginia with us. This is the second best thing. I spoke with them tonight and while it was very hard on me, it made it a bit easier to hear the laughter and happiness in their voices. They are doing fine and really just want Xander to feel better.
We thank you for your prayers and words of encouragement. Several of you have sent me verses and that has been amazing for the moments that I start to doubt. I can never repay each of you for your faithful thoughts and prayers.
I'm off to snuggle with Brandon before he heads back to Virginia.
So they discharged him with a paper saying that he still has failure to thrive, diarrhea and dehydration. We asked for a transfer to a Children's Hospital outside of Richmond. We were told the only place they could transfer us to would be UVA. UVA is a teaching hospital that is not a pediatric specialty facility. It is one hour away. Our requests to be transfer to a pediatric specialty hospital were denied.
I was flabbergasted.
Xander was obviously still in great discomfort and his diarrhea had begun again. Brandon and I prayed and decided to drive to Wilmington, Delaware to have Xander seen by DuPont Children's. We handcarried all the records we had and his adoption paperwork.
The triage nurse just couldn't believe what we'd been through. We got a room within an hour and the nurse took all my papers and made copies. She took a thorough medical history and examined Xander thoroughly.
Shortly after the ER doc came in puzzled. We explained our frustration, the inconsistencies in the records we had, and how he was still in pain. Xander was barely drinking pedialyte and his stomach was very, very distended. He also continued having very smelly wet burps.
We did a belly xray and we were told that it was abnormal. He was very full of something. Guesses were food and stool and his stomach was enlarged greatly.
Some of the lab results we carried here were just wonky.
We were told we were being admitted to regular peds and that a team that does hard cases would try to put together all of our pieces and we would consult with the specialties.
And then a stool sample came back positive for C. Diff and blood. So we are now on the gastro unit in an isolation room. Xander is not permitted to leave the room and everyone that comes in puts on gowns, gloves and a mask.
Everyone here has been amazingly gentle and kind to us. The nurse that told us about the C. Diff says that her gut says there is more going on than just that but that we have to start to peel back the layers of the onion.
We are obviously greatly disturbed by this news. We are struggling greatly with disbelief, anger and sadness but at the same time feel relief that we are finally where someone will help us.
Thank you for your prayers. We feel like prayers and God's goodness have gotten us here.
Thursday, January 26, 2012
And yet, yesterday, he refused to see us. He sent a message through the attending that we could follow up with him outpatient. I thought that was ridiculous and told everyone we had contact with how ridiculous I thought it was.
I called the number on the medical director's card and was told she would be returning to the hospital to speak with us. Her secretary immediately came upstairs to wait with us.
The medical director was apologetic when she arrived, but said that part of what we are facing is the "limitation of Richmond." This one gastro practice covers all the hospitals here, so even if we were in another local hospital, we'd get the same gastro. And since he was on call there was really no way to reach anyone else.
She said she could call a colleague at UVA but that it would be a phone consult because they do not have privileges here. So there would be no examination of Xander. I told her that was ridiculous.
She said there was a small possibility she could call in a favor and speak with another doctor from the same practice but that he was not on call so he of course has the option of not coming.
I told her that this whole thing was insane. I had a child vomiting, with diarrhea that tested positive for blood and he had dramatically decreased what he was eating and even drinking. I told her if no one could help us here, that we expected a transfer to a major pediatric medical facility outside of Richmond. (Richmond does have a Children's hospital but again, we'd get the same doctor.)
She ended up calling Dr. W and asking for a favor. He said he would be here this morning because he had a lecture here this morning and he would see us afterwards. We were satisfied with that solution.
The patient advocate was the next person in our room, and we let her know how the first doctor had treated us. We filed a formal complaint that will be evaluated by their quality team and their medical team. I also let her know that I fully intend to file a complaint with the medical board and our insurance. Her eyes were bulging out when I told her everything we'd been through here.
This morning, Dr. W arrived and took a full medical history for Xander. He examined him thoroughly. He asked a ton of questions that we answered willingly. He doesn't have any answers yet and he apologized profusely for that. But he is willing to try to find help for us.
He has removed ALL the dietary restrictions because he does NOT feel any of this is allergic in nature. When Xander was first admitted he was on a regular diet minus eggs, soy and milk. Then with the vomiting and diarrhea he was moved to a bland diet. ALL of those restrictions have been removed. Brandon and I are concerned about this, but willing to try. Dr. W thinks that we may have just had a coincidence with those foods. If things go badly, we can rehydrate Xander here.
Dr. W. is going to look back through the records and the history we gave him and see if he can come up with something. Brandon and I feel heard again. The second doctor is honestly the complete opposite of the first doctor. He was thorough, soft spoken, caring, empathetic and reassuring.
Xander's stools do not test positive for blood so far today. He is very fussy though and has a very large, round tummy. I feel like this is the calm before the storm, but we'll see.
This morning, he had lost the little bit of weight he had gained here. And he is still listed as failure to thrive.
Thank you for your prayers. We know and love God and truly believe that He loves Xander even more than we do. As a mama, that is very hard to imagine. In fact, just the other day, a nurse asked about Xander's pregnancy and it took me a few seconds to remember that I wasn't pregnant with him. The love we feel for Xander is great and it is very hard to remember a time without him. We are willing to fight and advocate for him for as long as it takes to get him the help he needs.
Please continue to pray for Brandon and I. We are weary but again, willing to do whatever it takes. Brandon is greatly worried about the emotional and physical stress on me, since I am expecting, so we are praying for God's protection for our sweet, tiny babe. Pray for Dr. W, that he is willing to be a champion for Xander and do whatever is necessary to get us an answer. Pray that Xander feels better soon. And pray for my other three children that are currently in Georgia with family. Solomon keeps looking around for his partner in crime, Xander. My children have never been divided in this way.
I'll continue to update as I am able.
Wednesday, January 25, 2012
We got him and the linens changed and he went back to sleep.
This morning we did another sweat test for cystic fibrosis and again.. he didn't sweat enough.
This morning he ate very little breakfast. A small sausage patty, a half a piece of toast and a handful of cereal. He refused rice milk.
And then all he wanted to do was rock. If I slowed down the rocking chair he would scrunch up his eyebrows and say, "Rock, mama."
So I did.
For over 2 hours. And then he vomited all over me and him. Again, more chunks of food.
The endocrinologist came in and said that his TSH was only a little high and that it couldn't cause all of this. The plan is repeat that lab in 6 weeks with our regular provider.
And then the diarrhea started. He's had two diarrhea diapers in a little over an hour and a half.
We changed the rice milk to pedialyte and he refused to drink.
The attending doctor came and spoke with me at length about his entire medical history. The immediate plan was that if he didn't drink a cup of pedialyte in 2 hours we would have to re-iv him.
He just finished his second cup. So at least we are holding off on the IV.
But we are back to the drawing board. The attending said she was going to the medical director and back to the gastroenterologist that we consulted yesterday. She is asking for a colonoscopy while we are inpatient.
In the meantime, she is going to speak with other collegues and see if she can come up with something... anything to help us.
At least today I feel heard.
Tuesday, January 24, 2012
I left the blog off with preparing for Xander's allergist appt last Wednesday. We went and she discharged us as patients and felt that NOTHING he was experiencing was allergy related.
Brandon and I sat in the parking lot stunned. I remember turning to him and saying, "Did that just really happen? Just she just say that there is nothing she can do?"
And he shook his head yes, still too flabbergasted to make a sound.
She had told us that everything was GI related and that we needed to be seen within 2 weeks by our gastroenterologist and that we needed to go ahead and schedule the colonoscopy. Xander lost a half a pound.
So we called the gastroenterologist's office and they said we could have an appt in 3.5 weeks. We shared how the allergist he sent us to said we needed seen in 2 weeks and that he was losing weight. They said there was nothing that could be done. So we asked to speak to the doctor. She said she would ask him to call.
And we waited all night. Nothing.
Thursday, we called back. We pushed to schedule the colonoscopy. We pushed to see the doctor. We called our primary care doctor for advice. His office told us to go back to the gastroenterologist. We said that we had tried that. We said that he was losing weight.. and asked what to do. We were told repeatedly to go back to the gastroenterologist.
Finally on Thursday, the gastroenterologist's office called and said that the doctor was changing Xander's formula to a ready to feed formula and to come get a sample. We arranged to pick it up the next morning.
Friday morning, Brandon went to pick up the formula and it was Alimentum infant formula. Xander is 2.5 YEARS old! Brandon reminded the office of his age. They brushed him off. Brandon reminded them that Xander has an issue with soy and it contains soy oil. The doctor refused to come out of his study to speak with Brandon.
At my wit's end, I paged a local dietitian friend of a friend. I told her the whole story. She agreed that Alimentum was not nutritionally appropriate for Xander at 2.5 years old. She told me to stomp my mama boots loudly and encouraged me to seek a second opinion for a gastroenterologist.
I called a large practice here, and got an appointment.. in April.
I called the allergist's office and asked for a referral to a new gastroenterologist since the lady that scheduled us said that it could help us get the appt moved up. The front desk lady at the allergist's office, said she would call me right back. She called the gastroenterologist's office and tattled on me wanting a second opinion. Next thing I knew, I had the gastroenterology office calling and asking if I had questions. I asked to speak to the doctor or have him call me back. They said that wasn't possible. I said it was all ridiculous and hung up.
I called the allergist's office and asked to have medical records prepared. The front desk lady was nice until she asked the patient's name. She told me she had called the gastroenterologist's office. I told her that I didn't ask for her to tattle and I just needed his records.
She told me all about the conversation Brandon had with the office gastroenterology office that morning. And she also said that the doctor would have to approve my records to be sent and that they would not be ready on Monday as we had arranged before I revealed which patient I was calling about. I was appalled.
We headed to Georgia to take the three children to my aunt's for a little break from the craziness. Solomon had become very clingy with all of Xander's screaming and Julianne was a constant puddle of tears. The mental health of our family was suddenly very shaky.
The gastroenterologist finally called on Friday night. He said the Alimentum formula was a miscommunication. Brandon said that if he wouldn't play the telephone message game with us and would speak with us directly that we wouldn't have this issue. Brandon said that we felt like he didn't care about Xander and really dropped the ball. He assured us that he really did care for his patients. He told us to continue the Neocate Junior Formula and to add a new food every 5 days to test foods. We asked what to do when he stopped drinking since his intake had already taken a hit and he said he was on call that weekend.
We continued to Georgia. We arrived at my aunt's. Xander screamed and held his belly and wouldn't go to sleep. He also quit drinking about 8 pm that night. So we went to MCG Emergency Room. He was xrayed and had an ultrasound to rule out intussusception. They did not find that, but what they did find shocked us. After over 2 years of diarrhea, he was constipated. They felt the diarrhea was going around the constipation. The muscle that pushes food through the intestines was going very slowly. They said that could be a side effect of the constipation or the cause. They put him on miralax-- a laxative. He finally fell asleep about 7 am.. after being awake for 22 hours.
We were cleared to drive back to Virginia, so we did. On the way, Xander still would not drink and cried often. We paged our gastroenterologist twice. We received no phone calls in return. We arrived home about 10 pm on Saturday night. He still had not had anything to drink. We checked our pedialyte and it has citric acid in it. Knowing his past reaction (severe diarrhea, bleeding bottom, screaming, scratching) and afraid to make things even worse, we put him to bed.
He slept until 4 pm. We checked him often but he was simply exhausted. When we woke him, his diaper was dry. Dry after all that time!!
We took him to a pediatric urgent care center. He was very dry and it took three tries to get an IV started. After Brandon explained the situation, the practitioner said she would remain professional but that she was not surprised about our issues with our gastroenterologist. They also tested him for RSV because he was very congested. That came back negative but they did a breathing treatment.
They called St. Mary's and arranged for Xander to be admitted directly to the pediatric floor. And we've been here since Sunday night.
Monday we were supposed to have a gastroenterologist consultation with a new to us gastroenterologist and the gastro never came. (what is with these gastros anyway!?!) The attending doctor put Xander on a regular diet (excluding soy, milk and egg) and Xander drank plenty of pedialyte.
We also had blood drawn for a thyroid panel, attempted to do a sweat test for cystic fibrosis, had a stool test done, and an echocardiogram for a murmur that was found (even when he was finally hydrated.) The echocardiogram came back normal. Part of the stool tests have come back normal and we are waiting on the others. The sweat test wasn't able to be done because he didn't sweat enough. The thyroid panel came back with elevated TSH. We have an endocrine consult tomorrow.
When the gastroenterologist did come, he tapped on Xander's belly and pushed on it. And then proceeded to tell me that he felt whatever the problem was that it was acute and had passed. Xander has had diarrhea for TWO YEARS. Xander has only had diarrhea in the hospital once (which is not abnormal when we make changes for Xander. He regulates for a little while and then it is back!) He will not to any additional tests, other than the one mentioned above. He said that he doesn't even think we need a colonoscopy. He told me that this is ALL allergic in nature and not a gastro problem. I reminded him our allergist released us last Wednesday. He shrugged. I asked him what he thought the past problem was and he said he couldn't say.
And then he walked out.
I sent Brandon a text at work and he called. I told him everything that happened. And then I laid on my cot here and cried. Xander's wonderful nurse walked in to check on him and found me upset. She really went to bat for us.
The attending said that if Xander would drink either formula or rice milk that we could be released. (However, the dietician I spoke with here at the hospital says that rice milk isn't enough fat or protein and the previous dietician friend of a friend I spoke with said the same thing.) But Xander will only drink pedialyte right now. According to her, everything else can be treated outpatient but he cannot go home on pedialyte.
Tonight we tried from 4-10pm to only offer him formula and he would not drink any significant amount. We tried new cups and the nurse tried bribing him with a matchbox car. All of that effort got us MAYBE 1 ounce in him. The attending finally okayed pedialyte again to prevent needing another iv placed (yet again, an amazing nurse went to bat for him.)
I'm beyond frustrated. I feel like everyone is playing hot potato with us and passing us around the various specialties. We spoke with a patient advocate and told her the same thing.
Please pray. Pray for Brandon and I to make our issues with Xander's care clear. Pray for endurance. We are both weary.
Wednesday, January 18, 2012
I was on top of the world.
And it quickly came crashing down.
So I went on the hunt again, in preparation for our appointment today.
And I found out exactly what I suspected. We still have too many variables in Xander's diet to really know much.
The first issue we have is consistency of formula preparation. I found that while the formula directions all say to use the scoop provided or a gram scale, that the scoop really isn't very accurate. Other allergy/gastro moms have reported that this inaccuracy has can caused issues with children that are especially sensitive. The most exact/consistent we could get would be to use Ready to Feed formula. But that comes at a cost too. We'll be purchasing a gram scale for Xander today.
Next, we just have too many formulas going to be able to narrow anything down. We have him on THREE formulas (doctor recommended,of course) : Neocate Jr. Chocolate, Elecare Jr. Vanilla and Elecare Jr. Unflavored with Pre-Biotics.
The flavored formulas contain a sweetener which some kids have a hard time with.
The unflavored formula contains Pre-Biotics and you guessed it, some children have a hard time with that too.
Of course, the "ideal" in a perfect world scenario would be to put him on ONE formula without Pre-Biotics that is unflavored. But he won't drink unflavored by itself--at all. (We've been using the unflavored mixed with the flavored.)
So our options are severely limited. I've read about an approach where if the child won't take the unflavored formula, that they put an NG tube in, which is an admittedly aggressive approach to find the child's baseline.
Then once you find a baseline, you can start adding things back in.
Brandon and I are going to be discussing our concerns with Dr. G this afternoon during Xander's follow up appointment. We really don't want to have to tube Xander. But, we would like to see some progress. Please pray that our concerns are heard and we come out with a game plan. And maybe a little hope too.
Monday, January 16, 2012
We originally started teaching Xander sign language because we felt he was frustrated with his lack of ability to effectively communicate with us. He slowly picked up words but was very hard to understand.
As he started the process of starting his formula, we noticed that he rapidly picked up words. His babbles turned into toddler sentences literally almost overnight.
Brandon and I just looked at each other with disbelief. Almost every night we would lay in bed and discuss which words he said that day. But, a part of us thought that perhaps this was a coincidence.
When Xander first started showing signs of a reaction from this past Thursday night, we noticed that his speech was one of the first things to suffer. Friday, I don't think he said more than maybe 5 words. "No!" was a popular word that day. Along with "Han-Manny" (Handy Manny.) He spent most of his day screaming and crying. He was a pitiful sight. And I began to panic a bit at the thought of him regressing so much.
Saturday and Sunday some more words returned. But it still wasn't near the language explosion that we originally experienced when he first started the formula.
But tonight? Tonight, my little talkative boy returned. He was such a chatterbox. He held conversations with us. He repeated what he heard on the tv and around him. He recited his colors. He sang songs and named letters. He asked us to identify different things.
Now, am I saying that the reaction caused him to lose speech and the other formula cured him? No! What I am saying is this: Brandon and I believe that he was in such pain and discomfort that speaking was really the last thing on his mind.
Do you feel chatty when you have an upset stomach?
No? Well, neither does he.
I have to say, this whole thing has been very frustrating and discouraging. It is very difficult to feel like you can't safely do a very basic thing for your child such as feed them. It is heartbreaking to not be able to help your child feel better. These reactions really just have to wear off and only time can help that.
I've researched and honestly, I'm not finding much encouragement for the future. It is a hard reality that I'm really struggling with and haven't quite accepted yet. NO ONE can tell me how many safe foods Xander will ultimately have. A lot of the blogs of other FPIES parents only have a handful of safe foods. Food trialing takes ALOT of patience and time. I've only found a single case where a child was diagnosed this "late" and that child was completely tube fed. It's a lonely and frustrating place to be.
But for now, this is where I am. Of course, I'm still searching and hoping for help for Xander so that he has the best chance at a sense of normalcy as possible. You should see the list of questions for the allergist on Wednesday! This mama bear isn't going out that easy. But there is a small part of me that is starting to realize that this isn't going to be an easy or quick road and maybe I'll have to accept a long term, new normal.
God give me the grace and the strength.
Sunday, January 15, 2012
Anyway, so we spoke with Dr. G yesterday (Saturday) and discussed Xander's status. He was still having diarrhea and had almost quit drinking on us. By 3pm, I had only gotten him to drink 9 ounces of his formula. According to the doctor, he needs 48 ounces to grow. (I know that before I said 32, but that was a miscalculation based on him still supplementing some from food, which he is not.)
He was still screaming and sucking his thumb violently.
So we asked her if this is still considered Multiple Food Protein Intolerance. She said that she had changed his diagnosis to Food Protein Intolerance Enterocolitis Syndrome (FPIES) when she went back through his charts. He has displayed low blood pressure over and over and while he doesn't have the violent vomiting that occurs commonly with FPIES, he does have the diarrhea component. Our allergist does believe that what we thought was occasional reflux was actually vomiting since all of his reflux testing that the gastroenterologist did came back negative. He hasn't done that at all since being on the elemental formula.
We are to follow up with her and the gastroenterologist.
So what does that mean for us? Well, so far not much. There is a possibility that he could go into shock after a vomiting/diarrhea episode and we'll be careful to look for that. Again, she has told us that because he is being diagnosed when he is older than a "typical" FPIES patient that this may be a long term thing for him. (This child was diagnosed as a toddler and only has 5 safe foods.)
I networked with some other allergy/gastro moms and they have all highly encouraged us to go to one of the top specialists in the country-- especially since he is now limited as to what elemental formulas he can have and he still has zero safe foods. Apparently Cincinnati Children's, Boston Children's and Children's Hospital of Philadelphia all have highly respected programs. But it could be months before we can get in.
Do you have goosebumps yet? Annalise was going to be followed by Children's Hospital of Philadelphia.
Hearing the hospital's name brought me instant peace. It was as if my mind said "Oh yeah...this isn't a surprise for God! Annalise was not a mistake for our family. It didn't work out the way we thought it would but crossing paths with her had meaning and there was a divine reason that we did."
So we just keep going. He's still our Xander even when he isn't feeling 100%. (I don't know if he is feeling better today yet because he is still sleeping. I haven't woken him for church.) We love him and will do whatever it takes to help him. We vowed that 2.5 years ago and that hasn't changed. We don't know where we will end up with him, but then we don't know that about any of our other children either.
But we know and love the One Who does.
Off to get ready for worship,
Saturday, January 14, 2012
Friday, January 13, 2012
Wednesday, January 11, 2012
Sometimes things are just unnecessarily complicated. And we were trying to move things back to being more simple.
It's about that time to start the process of simplifying our lives again.
So, the past few days I've been quiet on the blog. Others have noticed I've been quiet on Facebook too. I've been observing our lives and trying to figure out what can be simplified and what needs simplified.
Meals have always been an huge complication in our lives. And I'm not quite sure how to simplify them without causing boredom. Not too long ago, Tuesdays were Taco Tuesdays. But somewhere we became bored with that and moved away from it. So I'll be looking at my methods again and trying to simplify this again. I know that a lot of people eat the same thing every week, but that just isn't appealing to any of us.
I do need to rely more on my crockpot as cooking raw meat isn't going well at all for me at this point.
Homeschooling is going well, but I fear that our curriculum will have to change this fall. We've enjoyed doing unit studies but this fall we expect to have 3 children, 3 years old and under, so I'm not sure I'll be able to keep it going this coming fall.
Our finances will simplify themselves soon. Our van will be paid off this spring and we cannot wait! We've also trimmed the budget back a good bit in order to meet some goals we set and that also helped simplify things.
I'm eager to find solutions that will allow us to simplify more.
Wednesday, January 4, 2012
See.. right in the middle of all the Christmas stuff and medical stuff we've had going on, I got a particularly nasty virus on my laptop.
I stuck out my bottom lip and pouted for a little bit and Brandon went to work texting a friend of ours. 4 hours later, I was awoken by Brandon dropping the laptop on my hip and telling me I owed the Hatfields.. big time.
And in the very next breath, he said that they saved my documents and my pictures to disks, but the computer had to be set back to factory settings.
In my mind, I heard all kinds of alarms going off, but I was just happy to have my beloved piece of technology functioning.
I didn't realize how much I store on my computer. Now I do.
I went through the disks but couldn't find our budget. Insert stomach dropping into big toe. I worked tirelessly on our budget formatting and planning over several years.
It's all gone.
Enter, YNAB (You Need a Budget.) I downloaded the free trial and set to work trying to figure it out, on New Year's Eve night. So romantic, right? Between the video tutorials and the support forum, I found just enough to be dangerous.
But, I had no idea the amount of stuff I'd need to look up to get things tweaked just right.
So... on top of everything else, I've been trying to make our budget right. Some things are lost and will have to be recalculated. (Anyone know how much we typically spend for Easter? Yeah, me either!)
It's annoying, but I really think I like the YNAB method better. Even if I do get a little sad thinking about all that hard work that is now gone.
So... here is the yearly PSA. PLEASE backup your data!
Monday, January 2, 2012
Julianne looked a little sad, so I asked her what was going on. She told me that she really hopes God answers her prayers and she gets a little sister. We told her that it was too early to tell and not to worry, that God has it alllll planned out. :)
Then DeLainey came up with a grand idea. She thought we could have twins! A boy and a girl to keep our "teams" even. Julianne liked the idea better than a single boy.. and then she got a look on her face. I've learned this look means to brace myself.
"No! We should have TWIN girls. Lainey got two boys when she prayed for two boys, so I'll just pray for twin girls."
Well.. we told her that twins sounded scary to Mommy and Daddy, but that we would be thankful if there were twins or just one baby. And that we'd be thankful no matter what gender the baby is.
But the conversation stuck with us and started making us wonder.... especially since twins run in my family...
So one of Brandon's first questions during my ultrasound today was "How many are in there?"
Just one. :)
And then we saw a sweet little heartbeat flickering away. Ultrasounds never get old!
So, no more Even Stevens. One "team" will outnumber the other come August.
(Sorry the picture isn't fabulous. Ultrasound paper is very shiny and it was hard to get a picture without the glare, but covering my last name and my doctor's name. )
Baby #5 is due August 24th, 2012. I was thankful that I paid attention to my body and knew that "the wheel" was going to be wrong. Since I have preterm labor having an accurate due date is very important. By knowing this, I also knew not to worry when the baby measured "behind" according to the nurse's first date. Baby measured perfectly to my dates. I'm so thankful that I listened to the quiet whisperings of the Father.
God, we are SO thankful for this new little life. We know that life has been crazy the last few weeks, but we know that Your timing is perfect. We rest in that. I know that we'll work out the logistics with a lot of prayer and planning. I can't wait to see who You are knitting in secret. We love You and praise You and can't wait to see what You have in store for us in 2012. In Your Son's most precious name, Amen!"