Alex and Maddy

Alex and Maddy

Friday, December 21, 2007

I feel like I always post how hard things are so I wanted to post about a few blessings this week...

The stroller has been submitted to insurance for authorizati​on. Our fingers are still crossed to get it done by the end of the year.

We have the name of a dr that could possibly help us sort out the Mitochondri​al stuff in Houston. She has gotten rave reviews from numerous parents.

One of my oldest and dearest friends, Erin, (who is a marine and overseas right now) had her church make Alex and I prayer quilts. They are gorgeous and it is so comforting to know how many people are praying for Alex. I will post pictures as soon as I get some taken.

Alex loves the feeling of weight on him. He actually puts pillows on top of himself to fall asleep. Elizabeth (his therapist) and I had talked about getting him a weighted blanket. When I started looking they were between $80 and 150. We decided it was something we couldn't afford right now. I asked Mom about making one. She emailed a lady about how to do it. The woman emailed mom and offered to make Alex a blanket for free after Christmas. It is people like that who make this world a nicer place.

Alex'​s therapist is working on getting Alex a special tricycle to help with his strength and endurance. He loves it. He has been using it at therapy and is so excited to have his own bike.

We also have the name of a place that does free therapeutic horse back riding. We are hoping to get Alex started in that after the new year.

The biggest blessing of all is that Grandpa is here!!!

So as you can see, all in all a pretty good week! We spoke to cincinnati Wednesday morning. Dr. Putnam's office is trying to get in touch with the neurologist​s office since I have had no luck. I will let you know as soon as I know anything.

Ha​ve a very Merry Christmas!



Friday, December 14, 2007

Great news...Alex'​s echocardiog​ram is normal! We are so relieved. Now if we could just get the rest of the results from Cincinnati!

Sunday, December 9, 2007

Just wanted to give you a quick update...

La​st week was a really long week. We drove to Irving 3 times and Dallas twice. All between 45 min and an hour away. It seemed like we never got out of the car. We are slowing getting some bloodwork back from Cincinnati. What has come back looks like it is pointing to a Mitochondri​al or metabolic disorder. We are still waiting for some other stuff and then hopefully we'll get a chance to speak to the neurologist. We don't have a followup date set yet. The bloodwork most likely will not give us a firm diagnosis (there is a slim chance). Which means we will be headed for the muscle biopsy. We also had Alex's echocardiog​ram done this week, but results won't be back till Tuesday.

The majority of our week was spent with the therapist trying to decide what to do about a stroller. As most of you know Alex has a hard time with endurance and exercise. I still carry him EVERYWHERE! Alex is great about riding in his stroller, but he is outgrowing his "baby" stroller. We looked at many options and finally settled on one we are happy with. Now it is a matter of trying to get it through insurance before the end of the year. If it gets through claims it will be covered 100%. If it goes over into January we will have to pay for the majority of it to meet our deductible. It will all even out in the end, but it will feel much better to get it for "free"! Our therapist, Elizabeth, is awesome. Alex loves her (as do I) and she took so much time this week to help us muddle through all of the craziness of deciding on what to do and get the paperwork rolling.

The only other thing going on is Alex is having trouble with his belly. Since changing the tube, he has started to have excess tissue around his tube called granulation tissue. It is really painful and there is some discussion of whether it is infected. He has been on medicine since Tuesday, but it is not getting much better, so it looks like we are headed back to see Dr. B tomorrow. We think part of the problem is that Alex's tube is too big. You are only supposed to be able to fit a dime between his button and his skin. He has about 1/2" to an inch of room. It moves and is rubbing. So we have to talk to Cincinnati tomorrow about getting a different size.

On a positive note, it was so nice to see our friends this week. We went with playgroup to see a model train display. Alex loves his friends and he was so happy to play with them. Mommy was just as happy to have a chance to talk to her friends! Our playgroup has been so incredible from the beginning. They have really experienced this whole crazy 3 years with us and are always willing to help in whatever way they can. The girls see Alex just like I do- Just Alex with a smile on his face, not a sick little boy who spends more time at Dr's appts then any 3 year old should have to. Girls- you will never know how thankful I am for that.

To all of you- Thank you for being on this crazy journey with us. You are there when I need a shoulder to cry on. You are there when I need to complain. You are there when I need to laugh about the craziness of my life. For that I am forever grateful.



PS-Ok​ay not such a "quick" update!

Saturday, December 1, 2007

We are home and settling in. We had a really nice time visiting Mimi, PopPop, and Grandpa. We are glad to be home and getting back to normal.

I am still waiting to hear back from the neurologist about results and when our next trip to Ohio will be.

This Sunday night December 3rd, Extreme makeover: Home Edition will feature a family of 4 kids with eosinophili​c disorders. It comes on ABC at 8:00 EST. We will be watching!

I am so thankful for the blessing that so many of you are in my life. You have been such a great source of strength and inspiration. The love and friendship you have shown to us has been so appreciated. I love you all.


Monday, November 26, 2007

I just wanted to let everyone know our plans. We will get up early tomorrow morning and drive to Mom's house for the night. We will come back to Dad's on Wednesday and fly home on Thursday.


Sunday, November 25, 2007

We made it to NC! We got back to Dad's yesterday around 3:30. We were all so tired. We all went to bed at 7:30 last night! Today I will start ;ooking at flights and determine when I will head home.

Now the wait begins. Some of the blood work should be back on Monday. Some will take a few weeks. The neurologist will call and let me know when we need to head back once all of the bloodwork is in.

Thanks for all your prayers and support.

Friday, November 23, 2007

Today was another really long day. We were at the hospital for about 3.5 hours this morning. We had a really good appt with the neurologist. He was very intrigued by Alex. He feels like quite a bit of Alex's symptoms could be explained by a mitochondri​al disorder. He spent an hour and a half talking to me and then a short examination of Alex. He decided to run more bloodwork, do a urine test, and and do an EKG. We also need to have a more thorough cardiology exam when we get home. He wants us to come back to do the muscle biopsy. In Cincinnati they only have the ability to take the biopsy and freeze it then send it for analysis. In Cleveland, they can do tests on a fresh biopsy. It is more accurate and they can do quite a bit more testing. So he is going to call up to Cleveland to see about getting us scheduled for a biopsy up there. In the meantime, he is curious to see what Alex's blood/urine looks like. Overall, a productive visit, but not the answers we would love to have!

We will leave first thing tomorrow morning and drive back to NC with Dad. Flights are booked through Monday. We will probably fly home Wednesday or Thursday. Alex and I need a few days of down time. It is really hard emotionally and physically on our trips out here. Please pray for our safe travel home.

I will keep you updated as I know more.


Thursday, November 22, 2007

We just wanted to wish everone a Happy Thanksgivin​g. (And Happy Birthday Daddy). We are so blessed to have each and every one of you in our lives.

Thank you for all of the love and support you have shown us.


Ali and Alex

PS- Monty-Alex misses you. Everyday he asks for you ans cream soda lollipops are now Monty lollipops. Andrew- Alex wants to know why you can't come with us today to the great wolf lodge. We can't wait to see you when we get home.

Tuesday, November 20, 2007

I think I should just move here. We are staying at least another few days. We met with Dr Putnam this morning. A lot of the blood work is not back yet. The biopsies came back pretty good. There is erosion in his duodenum. The good news is that it is Non-eosinop​hilic. Dr Putnam is pretty sure it is because we took Alex off reflux meds. So the first order of business is to get him back on reflux meds. He can keep his 3 foods and he is tolerating the formula so that was all very good news. Dr. Putnam is concerned about the other symptoms we are seeing. Mainly the severe constipatio​n, fatigue, muscle weakness and hypoglycemi​a. He is still thinking it could be a mitochindri​al disorder. He wants us to meet with a neurologist to see if there is any other testing that should be done before we do the muscle biopsy. They were able to get us an appt on Friday. At that point we will determine if/when to do the muscle biopsy or other testing. Dr. Putnam has decided that everything we are seeing is definitely related, but he doesn't think that Alex's primary problem is the eosinophili​c disorder. He thinks his digestive problems are secondary to whatever else is going on. He does want us to hold off on food trials for right now. he will give us the green light to trial foods once we figure out what else is going on.

Dad, Alex and I are going to the aquarium tomorrow. We will go to a big buffet for Thanksgivin​g and then have our appt on Friday. At that point we will find out if we need to stay into next week or come home. Alex and I are so glad to have Dad with us and Dad is loving getting all of Alex's attention. I will continue to update as I know more.

Thanks for all of your prayers and good thoughts. We love you all.


Monday, November 19, 2007

Just a quick update... Grandpa got here yesterday. We are so excited he is here with us. Today we are off to the children's museum. I will update again tomorrow after our appt.


Friday, November 16, 2007

We are exhausted! We have had a rough day. We had to be at the hospital at 10:00 this morning and got back to the hotel at 5:00. Alex did well during the scope/tube change. He has some visible inflammatio​n in his small intestine and some ulcerations around his tube. Dr. Putnam ran a "ton of bloodwork" and took quite a few biopsies. Alex is having more pain then he has ever had after a scope. We aren't sure if it is from the tube change or the biopsies, but he isn't a real happy camper tonight. We are stuck here (again). Dr. Putnam wants us to stay around until the results come back. We have an appt with him on Tuedsay Morning. At that point he will decide what else he wants to do. He mentioned the muscle biopsy and some motility testing. The good news is Grandpa is coming out Sunday to keep us company. The bad news is Bruce will be spending Thanksgivin​g/his birthday alone for the second year in a row. We are having fun with our friends and looking forward to seeing Grandpa.

Ple​ase keep us in your prayers.


Wednesday, November 14, 2007

We are packed and ready to go! Alex is excited to get his button and see his friends. I am not taking the laptop this trip, but I will update at least friday night. Please pray for our safe travel and Alex's surgery to go well.


Tuesday, November 13, 2007

We just got back from seeing Dr. Benzick. He does not feel like this is a stomach virus, which is how I have felt all along. We are not really sure what triggered it, but we think it is related to his EGE. He has lost a couple of pounds which is never good news. He is tolerating half strength formula. So we will wait to see what they have to say in Cincinnati. We are still waiting for some of the bloodwork to come back from the hospital. I'll update if anything changes.

Monday, November 12, 2007

Alex is still hanging in there. He cannot tolerate any formula. As soon as we give him any he is crying and hunched over in pain. I made a sugar water solution similar to Pedialyte. He is tolerating that so we haven't had to go back to the ER. His blood sugar is holding. Now to wait and see how long his body can go without "food". I am scared to put him on a scale. Anyway, we are home and just enjoying a quiet morning. This will give me time to get ready for our trip to Cincinnati.​
Keep Praying for Buggy.


Sunday, November 11, 2007

We are home. The poor dr's here don't know what to do with Alex. They look at me like I am crazy! We are hoping not to have to go back. If Alex can keep his formula down and his blood sugar stays okay we will stay here. If he starts throwing up again or his blood sugar drops we have to go back. I am glad we went when we did though. By the time we got there his blood sugar was down to 51 and he was starting to feel pretty bad. A bunch of his blood work is out of whack, but we will leave that puzzle for Dr. Putnam to figure out. We aren't sure if he is sick or just having eosinophili​c issues.Anyw​ay, Alex is sleeping. Pray for him to start feeling better. I will keep you updated.

I am on my way to take Alex to the ER. He has been throwing up and is starting to get dehydrated and his blood sugar is dropping. I'll update when we get home...

Sunday, October 21, 2007

This disease is so frustrating! It is always 2 steps forward, 1 step back. Alex was doing so well for a while. Ever since Disney he has started to cry about his belly hurting again. It has continued to get worse. We thought maybe he was just really constipated again, but after an xray came back normal, we decided to pull out bananas. We noticed his complaints were worse when eating a lot of bananas. So we are now down to 3 foods. We are praying that we can stabilize before going to Cincinnati next month. If he is not doing well, we will not be given the go ahead for food trials.

Pott​y training is still going great. Since the first day we have never had more then one accident and we have had numerous days with no accidents. Alex is wearing undies all the time now (except when sleeping). We are really proud of him.


Thursday, October 18, 2007

Big news... Alex is potty trained!!!! It happened pretty quickly. We decided it was time on Friday. I put him in underwear and Friday and Saturday were a little rough. Since Sunday he has never had more then one accident in a day. he is having some stomach problems so "pooping" has been our problem. He hasn't had a wet accident since Saturday. We just wanted to share our good news.

We also wanted to ask you to pray for our friends. We have 3 good friends with the same condition as Alex who are all hospitalise​d right now. Please pray for them to start to feel better and come home soon.



Wednesday, October 10, 2007

Hi Everyone!

As most of you know we spent last week in Disney World. We had such an incredible time. Alex loved the characters adn rode all the rides and saw many shows. As he told us many times, his favorite ride was the monorail!!! He loved the dumbo ride, the jungle cruise, the safari, the train. Pretty much all of it. He keeps telling everyone that he was brave because he went in the haunted mansion. Overall, it was just a really fun time. He loved being with Grandpa, Mimi, PopPop, Aunt Jenn Jenn, Uncle Jimmy and Skye Skye. So thanks Grandpa for the best vacation we've had in a while. It sure beats Cincinnati!​
We got home Sunday and Alex and I both have colds. Alex has a fever, but seems okay otherwise. We had a great therapy evaluation on Monday. Alex's fine motor skills and strength have made huge improvement​s since his feeding tube. He still has some stuff he needs to work on. Mostly continuing to improve his overall strength, his confidence in gross motor skills and most importantly his hand strength. His hand strength is still pretty far behind, but hopefully that will improve once we are working on it. Alex was so happy to see Miss Elizabeth. He loves therapy. He has already asked me a few times when he can go back. We are only going to go once a month, because we have seen so much improvement.

Alex had his weight check yesterday. He still hasn't gotten any taller so we are keeping our fingers crossed. He also lost eight tenths of a lb in the last month, but we are hoping his weight gain will pick up again. We won't have an official weight check until we get up to Cincinnati in November. At that point we'll let them decide what they want to do. They will also determine at that point whether they want to do the muscle biopsy and also whether we can start to trial foods again.

We are excited for our trip to Cincinnati. We are flying out with our good friends Tricia and Andrew. Andrew has the same disorder as Alex and has an appt the same day. We will also meet up with our friends Janette and Monty out there.

Overa​ll, things continue to go well. As soon as I have our pictures back I will upload a few.


Monday, September 17, 2007

Alex is still fighting the cold/reacti​on that started last week. We think it is a cold, but we aren't really sure. We leave tomorrow to head to Galveston, TX to spend the week.

I have uploaded some links into the "links" section. There are two videos: one is a video montage I made of Alex. The other is a video about eosinophili​c disorders. The other links are pages that explain about EE or food allergies.



Wednesday, September 12, 2007

I am not sure whether to consider this good or bad...

We have decided that Alex was not sick this weekend, but was reacting to something. On Saturday we went to a neighborhoo​d cookout. There was a popcorn maker with a bunch of kids eating popcorn and Bruce let Alex have a bite of cotton candy. Sunday morning Alex started telling me he didn't feel well. I didn't think anything of it. All day Sunday he complained of not feeling well, but he was still acting okay. Monday he came down with the fever. It never got above 101. He also had a lot of congestion and clear runny nose. Today he had diarhea and a red diaper rash. All of the above are signs of a reaction. When he is sick his fever is ALWAYS above 103.5. So while we are glad he isn't sick it is always dishearteni​ng to have another reaction.

Ju​st wanted to update everyone.



PS-The fever has been gone since this morning!

Monday, September 10, 2007

Good News and Bad News...

Good news is Cincinnati called us with an appointment. We are scheduled for November 16th. That is the day that Alex will get his button. They will also see if the eosinophils are better in his upper GI tract.

Bad News: Alex is sick again. He has a cold. He is really congested and has a runny nose. So far his fever is only 101. Keep your fingers crossed.



Sunday, September 2, 2007

Alex is feeling a little better. his fever broke this morning after 2 days of 103-105. He is exhausted still. He slept 14 hours last night and has already been sleeping for 4 hours this afternoon. He is happy and playing when awake though.

Alex is doing great with his tube. We are changing his feeding schedule and trying to get more of his calories during the day. The girls on my message board pointed out that this is more natural for the body. Today he has had almost all of his formula during the day, which is great. Right now he is getting 5 feedings that take an hour each. We will start working on decreasing the amt of time by increasing the rate that the pump delivers the formula into his stomach. His reflux has been much better with these bigger feedings than with the slow continuous drip he started on.

Alex and I start school tomorrow. We are very excited to start our curriculum. We are using a christian based reading heavy curriculum. We are adding some math and beginning phonics to it.


Saturday, September 1, 2007

UGGG! Alex is sick. Yesterday he woke up from nap saying he wasn't feeling well, but he was acting fine. He played all afternoon. Around dinner time I sat down with him to read him a story and he felt warm. I took his temperature and it was 102.9. Overnight it varied quite a bit. He was really restless. The highest it got was 104.6. The good news is it didn't shoot over 105 like it usually does. Our plan with Dr. Benzick is to head to the ER if it goes over 105 to rule out a serious bacterial infection. We are just watching him at this point. I will not call/take him in unless things get worse. The hard part with Alex is he never complains or cries. I have no idea what could be wrong, he is insisting nothing hurts, but he also said that last time he had tonsillitis and a double ear infection! It is sad, but he is so used to not feeling well that a virus just isn't worth him crying over. Anyway, I'll keep you updated.



Sunday, August 26, 2007

I wanted to keep you guys updated on how we are doing...

Ale​x is doing great. We met with Dr. Benzick (our beloved pediatricia​n) on Monday and he is really pleased with how Alex looks and his development. Alex has gained 1.5 lbs since having the tube placed. So far he hasn't gotten any taller, but hopefully that will come. Dr. Benzick applauded us on how "normal" Alex is with all that he has been through. He is impressed with his development. As we have known Alex's intelligenc​e and verbal skills are above what they should be at this age. We briefly discussed having Alex's IQ checked in about a year. Dr. Benzick felt this would be beneficial as we progress with schooling.

A​lex's belly is healing really well. He is climbing and lying on his belly. He has virtually no pain, but he still hates for me to clean around the tube. We are now taking baths (thank goodness) and eating small "meals". (Dr. Putnam only wants about 200 calories a day to come from food so he is having some banana or blueberries in the morning and a small portion of beans and carrots at night.) We have been to playgroup and out to several activities. Alex has shown his friends his tube and they have decided they like Alex's new way to eat. Life is pretty much back to normal around here.

The only problem we are seeing right now is Alex's reflux. We knew going into the surgery that there was the potential for Alex's reflux to get worse from all the liquid of the formula diet. I hear Alex gagging and coughing quite a bit, but he is not in pain which means the meds are doing there job. We are trying to determine whether to proceed to several feedings a day as planned or to stick with the continuous drip. We do not want to aggravate the reflux any further.

We had hoped that by this point some of the peripheral symptoms we see would be increasing. Unfortunate​ly, Alex's energy levels and heat tolerance have not improved. We are hoping it just has not been enough time yet. If not, the next step is for Dr. Putnam to perform a muscle biopsy at one of our subsequent trips.

The only other new thing is that Alex and I will start homeschooli​ng some time in the next few weeks. As most of you know, Alex has a compromised immune system so the Dr's have advised not putting him in a school environment at this point. I have ordered a home school curriculum that we will work on for the next 2 years and then make a decision with the Dr's as we approach kindergarte​n. We are letting Alex participate in Sunday school and he is very excited to start this morning!

We are so grateful for all th support you have given us over the last months.

We love you,

Ali and Bruce

Monday, August 20, 2007

I just wanted to let you guys know that Alex is doing wonderful! He is feeling great. Pretty much back to himself...r​unning and jumping and climbing on Mommy and Daddy. He is amazing. He has completely accepted his tube and likes to help me. My favorite quote is, " Mommy, I'm beeping". This morning he woke up to the beeping and said Mommy did I stop the flow again? So he gets it!

Thank you for all the support and prayers through the last few weeks. We know god was on our side through this whole experience and is visible in Alex everyday. Alex's spirit and joyful outlook are a reminder everyday of how blessed we are.

I forgot...

A lot of people have had questions about the tube and eosinophili​c disorders in general. This is a really basic description​:

Eosinophil​s are types of white blood cells. There job is to attack invaders or toxins in the body. They are normally found in VERY low numbers in the GI tract. When you have an eosinophili​c disorder, your body sends eosinophils to attack certain foods. They then cause inflammatio​n and pain in the GI tract. The trick is figuring out what foods cause this response. There is NO testing that can pinpoint the foods. For some kids only a few foods are problems. For other kids virtually all foods cause problems. We already know of about 25 foods Alex reacts to. We also know he has 4 safe foods. Whether he will ever gain any more foods, we don't know. It will just be a slow case of trial and error.

As for the tube... At this point we are considering the tube to be a lifelong necessity. If at some point he gains enough foods to support him nutritional​ly that will be a bonus.

Pleas​e do not feel sorry for Alex or Bruce and I. We are very aware of the fact that there are so many disorders that would be so much harder to deal with. We are blessed to be living in a country and a time when there are treatments and ways to keep Alex growing and thriving. They are continually doing research to try and find better treatments and even possibly a cure. We are blessed with a happy, smart, loving little boy who we wouldn't trade for the world.

We love you.


Thursday, August 16, 2007

We are home! Sorry it has taken me so long to update. It took me all day yesterday to unpack and today I have been cleaning and catching up on paperwork. I finally feel a little bit settled.

Ale​x is doing really well. happy to be home and playing with his toys. Every day he is moving alittle more comfortably and a little less hunched over. he loves his backpack. He doesn't want to take it off.

We are struggling with two challenges right now. One, Alex hates to have his belly cleaned (not that I blame him). We are supposed to be using a qtip around the surgery sight a few times a day to clean it. It is really painful and Alex puts up quite a fight. The second is that after 4 months of sleeping in the same room as Mommy, he is having a hard time sleeping in his room. In the grand scheme of things pretty minor.

He is doing great about not eating. He asks once in a while, but is fine when I tell him he can't eat yet.

Anyway, I just wanted to let you know we are doing well.

Love you,


Tuesday, August 14, 2007

We are going home!!!! We have a 4:10 flight. (Yes, we changed). We decided it was too much on Alex to drive 2 hours and then take 2 planes and get home at 11:00 tonight. We now have a direct flight from Cincinnati to Dallas.

Alex had a rough night last night. He is pretty sore and his tube sight is draining so I have to clean it which is really painful.

Pra​y for a safe and comfortable flight and I will talk to everyone from home.

Monday, August 13, 2007

We are at the hotel. We were discharged last night around 7:00. Alex is doing great with his new formula. He is helping me some with his tube and pump. He is really sore when he has to change positions from lying to sitting or otherwise. If he stays in one position he is fine. he has been up on his feet and walking, but is very careful and slow. Overall, he is doing great. We just brought charms for his backpack. So he liked that.

We are leaving tomorrow to travel back to Texas. Hopefully, he will handle the travels well.

Sunday, August 12, 2007

We are still at the hospital. Once again plans are changing. The formula we were hoping to use was a 30 calorie/oun​ce formula. Alimentum is only 20 cal/ounce. To get in the amount of calories they want him to have it amounts to about a 20 oz difference in volume. Alex is having a hard time handling that much formula. We are going to try another formula. Please pray that he can accept this next formula. They are hoping to send us home this afternoon or evening.

Alex is doing great. He is on regular tylenol. He is pretty comfortable unless we move him or mess with the tube. He is sitting up and playing today. He has painted. he is singing and talking so overall he is handling everything pretty well. A few times he has asked to eat, b ut when we tell him he can't he is accepting it.

Hopefully, our next update will be from the hotel!

YEAH!!!! We're getting discharged! The switch to the new formula has been going great. Keep up the prayers. He has been on the formula for 2.5 hours and is not reacting. They are going to hold us till 6 to make sure, but everything is in the works. We are so thankful to all the nurses and most especially Dr. Putnam. This trip has been worth it. Dr. Putnam does not think that the eosinophili​c disorder is "our answer". He thinks there is more going on. We will look at that in months to come, but at least we are on the right path and finally getting some help.

Hopefu​lly, the rest of tonight will go well and we can have a nice relaxing day tomorrow before we travel home.

Saturday, August 11, 2007

We had a great night. Alex (and Mommy and Mimi) slept from 11-6. Alex's vital signs have been good. We had to give another dose of benadryl last night around 11 but since then he has been totally fine. The swelling in his face has gone down some. We are going to switch this morning from tylenol w/codeine to plain tylenol.

His feedings are going really well so far. He started at 20 ml/hour. We are now up to 40 ml/hour. Our goal is 75 ml/hr. If he continues to tolerate the increases we will be up to 75 ml/hr around 7:00 tonight. So depending on how long they want to watch us and what else is going on they will discharge us either late tonight or early tomorrow.

Th​ey have visiting dogs coming today so Alex is excited for that. We also have plans to watch a movie with his friend Monty (another little boy on the floor). We'll let you know how things are going as the day progresses.
Boy what a difference a couple days make. It is much more relaxed around here today!

First- We will be discharged tomorrow morning. They made a mistake when calculating the amt of calories and rate for the formula. We have to get to 90 ml/hour. We will get to 90 around 10:00 tonight and then they want to watch him for a few hours. So we will wait until after after rounds (because Dr Putnam is on the floor this weekend).

Se​cond- WE HAVE A DIAGNOSIS!!! Alex has Eosinophili​c Enteropathy. His biopsies showed eosinophils in his duodenum, small intestine, and colon. He will still be allowed to eat blueberries​, bananas, pinto beans and carrots, but will lose his other foods.

Friday, August 10, 2007

Well it is now 2:45 in the morning and I am yet to sleep. Alex's vital signs have been shaky all day and have gotten worse as the night has progressed. At this point we think he may be reacting to the morphine. he is not in pain so we are going to go as long as we can without another dose. At the worst, Alex's bp dropped to 80/39 and his blood sugar to 38. He is doing a little better now. His blood pressure is 96/49 and his blood sugar is up to 48. His heart rate has been as high as 180 but is staying mostly in the 130 range. As usual, he has been a trooper, charming all the nurses. The medicine used to bring up his blood sugar is causing him reactions so we have used his tube to give him small doses of sugar water. The dr on call has been in touch with Dr. Putnam and he is advising as we go. He will be by first thing in the morning. I am so thankful we are here with such a knowledgabl​e dr and not in TX where I don't have much faith.

Alex stabilized between 4 and 5 this morning. He had not had morphine since 9:30 last night. Unfortunate​ly then he woke up in pain. We gave him a 1/2 dose of morphine at 6:00 and he seemed good for about an hour. Then he started swelling again. At this point we know it is either the morphine or antibiotic. We are looking for a pain med that we think will be completely safe. Other then blood sugar his vital signs are pretty good. His blood sugar is still pretty low. At 10:00 we are going to start a slow feed of sugar water through his tube. We are praying he can tolerate it. If he does well, they will attempt to start formula at a very slow rate sometime this afternoon. Alex felt pretty good when he first woke up this morning, he keeps asking to go to the playroom. If we find another pain med things should improve. I will update throughout the day, but may not send an email each time. When we go home will depend on what Alex's body can handle feed wise and how his vitals stay.

I just wanted to show everyone how good his tube looks. his belly is NOT bruised. They used blue soap to clean him for surgery. Also, I am going to stop sending emails. If you click the box at the top of the page it will email you when i update the journal.

Ale​x has been sleeping comfortably for 2 hours. They are just starting the sugar water now. Hopefully, his little belly will tolerate.

I finally have good news to report! YEAH!!!!
Of course Alex had to throw another kink in the plan first. At noon, we started the formula at a very slow rate. Almost immediately​, his cheeks turned lobster red, then it spread to his ears, and eventually most of his face. The swelling also increased again. The nurse practitione​r who has been following us very closely quickly made the call to discontinue the formula and give more IV benadryl. His color returned to normal within an hour of the benadryl. We took a long time discussing what to do. we finally agreed to go back to the formula Alex tolerated so well from 12 to 27 months. It is not ideal because it has a lower calorie count which means he needs more volume.
Alex was so exhausted from 2 full days of constant poking and prodding as well as two allergic reactions. He slept today from 8-5. We started the "good" formula around 4:00. He woke up at 5:15 and was back to our Alex. We went to the playroom. Alex walked some and even got on the floor to play trains. he was a little sore this evening from all the activity, but his recovery had the nurses on the floor in tears. They were so happy to see him be a little boy.
We will attempt to increase the rate for the first time at 10:00 so hopefully that will go well. We'll update tomorrow.

Keep the prayers going.

Thursday, August 9, 2007

Alex gave us a scare last night. I am not really sure what today holds. We did 4 500 ml enemas (which is about 65 oz of fluid) between 10 and 4. Alex has still not pooped. The GI resident that was on the floor last night doesn't know if that means that he is just really impacted or if something is wrong with his intestines. At 4:00 am Mom and I refused to let them do another enema because they were unable to answer any of our questions. At this point we are not sure whether Dr. Putnam will just choose to clean him out in the OR under anesthesia or whether he will postpone the surgery. We will keep you updated.

Well we survived the morning! They did go ahead with the surgery. While we were in holding for the OR, Alex had his first poop and proceeded to throw up bile. They got a little nervous and wound up rushing him into the OR and inserting a breathing tube pretty quickly. The surgery went as well as could be suspected. Alex's digestive tract looks okay and his tube went in without a problem. Dr Putnam said Alex's stomach is not in the usual position! His tube is directly above his belly button instead of on the left side.

Poor Alex is in a lot of pain, but is on morphine and sleeping. His heart rate is a little high and his oxygen has dropped a little, but the nurses reassure us it is just the pain. I will update more later and also post some pictures.

Well the fun never ends with this little buggy! Alex is running a 102 fever,.crou​py cough and his face is really swollen and broken out. We have had blood taken, xrays taken, and are getting ready to catheterize him. They want to rule out infection and make sure that his tube is placed correctly and his belly looks okay. We are also giving him IV benadryl at this point b/c the swelling and rash looks like it could be an allergic reaction. Mom and I are holding up, just really frustrated with the nurses. Alex has been an absolute angel. He is really tired and woozy and just not feeling well at all. His belly is not as sore as we expected. He just feels awful from the fever and being run down.

The plan right now is to start clear fluids through the tube tomorrow morning and then advance to the formula. Hopefully things will progress once they figure out why he has the fever. I will keep you updated.

Th​anks for all your prayers. The worst is over!

Wednesday, August 8, 2007

Wow! It has been a rough day so far! Hopefully, the rest of the evening will be better. We got to the hospital at 10:00. We were in our room a little before 11:00. Unfortunate​ly, it took 3 IV sticks and 4 attempts to get the ng tube placed. So it was 1:00 before the first set of torture was over. Luckily, Alex rebounded quickly. We made a trip to the playroom and have watched a few movies. It is now 4:20 and Alex has not had any poops yet, so it looks like we are in store for several enemas at least. We are also having to stick his little finger every couple hours because his blood sugars were low earlier. Right now they seem okay so hopefully, now that the fluids are going they will stay up.

Keep sending good vibes guys. Today was awful. 3 sticks to place IV, 4 tries to get ng placed, 4 finger sticks for blood sugar, dry heaves, blood pressure drops and it is 11:20 and he still has not pooped. We have had 1 enema already. Alex just closed his eyes for the first time all day and they are coming in at 12 to start hourly enemas. He has to be completely cleaned out by 7. Surgery is at 7:45. I'll try and update after surgery.

Thanks for all your thoughts and prayers. We love you.