Alex and Maddy

Alex and Maddy

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.