Tonight I choose to start with the positive...​
Bruce's eye procedure went very well. It was shorter then expected. Hopefully, that is the end of it and he will have no lasting effects.

Ale​x has felt a little better today. He has not had a fever at all. We have the oxygen down to one liter and his saturations are holding steady. med transport was able to get his peripheral blood culture today with just one stick!

ALEX"​S FEEDS ARE UP TO 15 CC'S/HR AT 75%!!!!!!!!!​
On to our concerns...​Alex is still pretty puny and tired. He is fighting a pretty serious infection. His labs are still off. The docotrs are not sure what to do. In a "normal" child, you ALWAYS pull a port that is infected with gram negative rods. In Alex there is the very real concern that our access for central lines and port is very limited. If we use all those spots it would be devestating to Alex. So it is a much tougher decision. Please pray for the docotrs to have wisdom in making these decisions.

L​ast night was once again a long night. Dr. Pacheco made the decision to give Alex IVIG. Well IVIG cannot be run with TPN so we had to stop his TPN. Within an hour his blood sugar had dropped to 53. So we bolused some D10. This caused his blood sugar to go up to 215. We continued to see saw. Alex's temp also went from 95 to 102 within an hour causing severe chills. Needless to say Mommy didn't get much sleep.

Alex needs blood tomorrow as you can see by the picture! It is amazing how white he can get. Even his lipd don't have color!

Hopef​ully, each day will continue to improve.

Ali​

Alex is still really puny today. He has a temp over 102. His labs still don't look great, but they look MUCH better then yesterday.

T​he good news is feeds are up to 10 cc/hour.

Ple​ase continue to pray for our family. We are trying to remain upbeat and faithful that God will bless us. Howver, it is difficult when the hits keep on coming. Todat Bruce found out that he has a hole in his retina that will require a laser procedure.

A​li

Update at 6:30: Alex is struggling again. We have had to put him on oxygen. His saturations are lower then we would like even on 2 liters of oxygen. We are running more labs. Dr. Pacheco (our immunologis​t) has also decided to run IVIG to try and help his immune system fight this infection. Dr. Koenig is concerned about him, but we are hoping he will turn the corner tomorrow. Since she will not be around tomight she will have the ICU doctor check on us periodicall​y throughout the night to make sure Alex stays stable and doesn't get any sicker.

I will update in the morning.

For the most part we have had an okay day. Alex has been quiet at times and normal at other times. He stayed fever free for most of the day. he spiked a fever of 101.3 shortly after 7:00. Right after we found out that Alex has a central line infection. (Gram negative rods- for those who want to know)We are on an antibiotic that covers this infection. Tomorrow we will discuss whether we need to remove Alex's port.

The positive to come of the day is that early on we all agreed that feeds were not responsible for last night. So we restarted feeds around lunchtime and he is tolerating them well.

I will update in the morning when i know more.

Ali

Prayers needed this morning! Last night was a long and scary night. Around 10:00 Alex started shaking uncontrolla​bly. His whole body was shaking and he was scared and uncomfortab​le. His temp was 100.7, but not a big deal. Over the next 2 hours we watched his temp climb to over 105. The shaking continued and he started retching. His heartrate never came below 180 and was as high as 215. We drew labs, cultures and cathed him for urine. His lactate was extremely high. At that point none of his other labs were back and Dr. koenig felt like it could be a metabolic crisis brought on by feeds. So we stopped feeds. This morning his labs look horrible and definitely indicate an infection. Overnight his fever came down after starting 2 strong antibiotics. This morning the fever is gone, but he still feels really cruddy. Please pray for Alex to feel better, for the doctors to have wisdom, and for me to have strength on no sleep.

Ali

Things continue to move in a positive direction! Alex is now on 5 cc's an hour of half strength formula. He is feeling great.

Alex had a friend come visit today. Lauren is Samuel's sister. Samuel is one of our mito friends. It was so awesome to watch Alex play and enjoy being a kid this morning.

If things continue to move along we should be home in about 10 days. Please pray for Alex's little body to cooperate!

A​li

"This is the day that the Lord has made. Let us rejoice and be glad in it." Psalm 118:24

Wonde​rful News! We have feeds (sugar water) running at 5 cc's an hour. Guess what...the surgeon is NOT crazy! We put the enzymes in and 45 minutes later were able to flush an ounce of water without any leaking. I am so excited. Please pray this continues to work.

In other exciting news...Dr. Koenig thinks she has found a way to treat Alex's high ammonia levels. She actually found something in Alex's labs that she is going to use for research because she thinks she is on to something.

P​lease say some extra prayers for Bruce. He is struggling as he looks for a job. He is extremely discouraged and disheartene​d right now. And if anyone knows of any sales jobs, let us know! :)

Thanks for the continued support. It means the world to me.

Ali

We have had nothing but GREAT news today! Most importantly​, the surgeon came by and it appears to him that the button is in the right place. He believes the button is clogged. So we are going to put aa enzyme in for the next few days and try to clear it. If on Monday the button is still not working. They will take him to the OR and replace the button in the same hole. So overall things appear to be much better!

We also had the repeat of his kidney ultrasound today. The tech thought his kidneys looked fine so we will just wait for the radiologist​s report, but it looks like that may have been a passing thing.

We have also decided it is time to try a systemic medication for his yeast. He keeps breaking out in new spots.

Please keep us in your prayers as we add two new medications in the next day.

Ali

I still don't know anything. I wish surgery would come by so I would know the plan. We are doing the repeat of his kidney ultrasound tomorrow. Other then that Alex is doing great. He really enjoyed his 3 days playing with Daddy.

I promise to update as soon as I know anything.

Al​i

Thank you so much for all the thoughtful words and prayers. I am back to marching one foot in front of the other with my chin held high.

I do not know any more as the surgeon did not come by today like he was supposed to. But according to Dr. Koenig there are two possibiliti​es. One, that the tube can be repositione​d in Interventio​nal Radiology. This would be a much simpler procedure with a pretty quick recovery. The second is that the surgery needs to be completely redone. This would entale the entire 7-10 day recovery that we endured the first time. Until the surgeon comes and talks to me I won't know which road we will walk.

Hopefu​lly, I will have news tomorrow.

Al​i

I am devestated....​I don't know what to say. Alex's tube is either out of place or obstructed. Regardless it is going to have to be redone. I will update when i know more.

Ali

Pretty good news...So by last night Alex's Lactic Acid was much lower. We believe it was probably still high from being so sick before he got his blood. Alex is feeling pretty good today. Really our only complaint is the continuing breakdown of skin around the Jtube. It is extremely red, burnt, and very angry looking. He also has ringworm in several areas that we have not been able to clear. They are thinking we need to try a systemic fungus medication. The major concern of course being the risk of allergic reaction. other then that no real concerns.

We are getting ready to go do the contrast study to make sure the Jtube is in place and not obstructed in any way. We are also revisiting whether we need to do the CT scan with contrast.

I will update if I learn anything new.

Ali

There are days/nights when it is all I can do to keep my composure. last night was one of those nights. Let me back up. Dr. Koenig has always transfused Alex when his hemoglobin gets below 10.5. This is higher then the "normal" transfusion rate, but Alex doesn't have the ATP (energy) to make enough red blood cells to bring up his counts. So she transfuses him before he starts feeling really awful. Hematology was brought in early this month and suggested we wait until Alex's hemoglobin is 8 before transfusing. This is extremely low. Dr. Koenig agreed to try one time and either it would be okay or we would be able to show hematology why a mito kid couldn't go that low. Alex has been below 10.5 for several days now.

So back to yesterday... Alex was a little puny all day yesterday and his heart rate was high. We weren't sure if it was because he needed blood or becasue of the fever because both can increase your heart rate. Around 4:00 his heart rate went up to the 180's and he started shaking profusely. We immediately called the doctors. At that point we decided it was time to transfuse.

Fast forward to last night...We had one of the few night nurses I really struggle with. I ask 2 things of our night nurses: be quiet and keep the lights off. It is one thing when you don't get sleep for a night or two in the hospital and then get to go home and resume normal sleep, but when you are here month after month the sleepless nights take their toll. Well Alex fell asleep at 9 and at 9:30 a pump started beeping. I am perfectly capable of troubleshoo​ting the pumps, but I decided to see if she would come fix it. She did AN HOUR LATER!!! That was the start of a bad night. Normally, when we transfuse we have to stop Alex's TPN which causes him to drop his blood sugars so it is quite a production. I was under the impression we would avoid that last night becuase we had the second IV in his neck. Well she came in at midnight to tell me we had to stop his TPN anyway. I was not about to start checking blood sugars every 30 minutes all night long so I asked to see the doctor. We finally compromised and decided to run his TPN at a greatly reduced rate and then check blood sugars twice. We also have numerous medication right now that require the nurses to be in quite a bit. Well this nurse turned on several lights and woke both Alex and I up talking and asking questions every time. So I was/am not a happy camper. Anyone who has spent any time "living" with me knows I need my sleep or I get GRUMPY!!

So this morning, we are tired, but Alex's fever is gone and I thought we were headed for improved days. One of our favorite doctor's came flying in here before 9:00 with the news that Alex's white blood count had dropped significant​ly and more importantly that his Lactic Acid was 4.1!!! We are trying to run some labs but of course neither Alex's port or his IV in his neck has a blood return. So we are trying to TPA his port so we can check his labs. Other then being a little cranky he is acting fine. We think he is likely fighting something, the question is whether it is an infection in his stomach or something else.

I will update again later. Please pray for my patience today!

Ali

As is the case so many days here there is both good and bad news to report!

The bad news is that after starting the IV in Alex's neck and heading to CT scan the radiologist​s refused to use that line for contrast. After many phone calls and much pleading, the decision was made to do a CT without contrast yesterday and then attempt to get another Iv to do one with contrast this morning. Well this morning one of our favorite med transport guys (IV experts) came in. He knows it is practically impossible to start an IV on Alex. He called CT and got them to agree to use the IV we already had in his neck if a dr approved it. So we were all set. Then the head attending (who is here this weekend and we have never seen before) decided not to expose him to radiation 2 days in a row and cancelled the CT. So we do not know definitivel​y whether Alex has an abscess or not.

However....​Since starting the second antibiotic (that was added to treat if it was an abscess) not only does his stomach look and feel better, but the drainage around his J tube has virtually stopped!!! Praise God. Maybe will be able to feed! He does still have his fever though.

The plan is to wait until his fever is gone and make sure he doesn't have a central line infection. then we will do a contrast study to make sure his Jtube is in place aswell as repeat the kidney ultrasound. Assuming all of that is good we will resume our sugar water at 5 cc's/hour and pray for better results.

I'l​l let you know if anything changes.

Ali

Where to begin...We need prayers!

The "fun" started yesterday. We went for Alex's ultrasound early yesterday. They did not see an abscess. However we came back from the ultrasound and our GI said he was pretty sure there was an abscess which left us at a loss. Shortly after that the radiology report came back and showed a problem with one of Alex's kidneys. The rest of yesterday was pretty uneventful.​
This morning started pretty well. Allison, Brookie, Peyton and crew came to visit again. Alex was so excited and the kids had even more fun playing today. Things seemed great. Alex was really tired when we got back to our room and his belly and legs were hurting, but I just figured he was tired from all the excitement. The Renal (kidney) doctors came by and asked some questions. They decided they think this could be a passing thing caused by the 2 abdominal surgeries and decided to repeat an ultrasound in a few days. After they left I realized that Alex felt warm. I checked a temperature and he had a fever of 102.2. We immediately did some blood work and checked some blood cultures. We rechecked temp and it was up to 103. They also ran a urine culture. Our pediatricia​n came by and we decided it was imperative to do a ct scan of his abdomen at this point. So med transport came by for the second time. This time to start an IV. After one blown attempt in his hand, we made the decision that we were not going to needlessly stick him over and over as we have done so many times. We started the IV in his neck as we had done for his last CT scan. After some tylenol, his temp is down to 101. We do know that his lactate is up and his blood work looks like there is an infection.

Please pray for answers and for Buggy to feel better. I will update if I know any more tonight.

Ali

Today was a great day in some ways and tough in other ways...

The rough part was that Alex's belly is really sore. At this point the doctors are relatively sure that Alex has an abscess. He continues to drain pus out of the bottom of his incision which sits in his belly button. This same area is also flaming red. I was trying to wait to update, but it is getting too late. We are supposed to be doing an ultrasound of the area to see if they can see an abscess. We have also stopped feeds once again. The leaking is unbelievabl​e. Yesterday and last night we were changing gauzes hourly and they were saturated to the point of being able to wring them out. As soon as we figure out the abscess we will tackle the Jtube. The pediatricia​n has personally called our surgeon. We did not see him today, but he is probably waiting to see what the ultrasound shows.

On to the good...We had the most wonderful treat today. Our good friends, Allison, Brookie, and Peyton (as well as Tony and Allison's parents) came to visit. Alex was SO excited. My favorite snapshot of the day was Brookie putting her arm around Alex, kissing the top of his head, and saying, "I have missed you so much". It was so sweet. Playgroup also sent large photos of all the kids to hang on our wall. It is so good for Alex to look up and see his friends.

After Allison and the girls left, Missy and Samuel came and picked me up for lunch and to take me to Target. Thanks for chauffering me around and hanging out.

So needless to say it was a nice day of fun and friendship for me!

Please pray for answers so we can continue to move forward and one step closer to home.

Ali

I really think we live under a black cloud sometimes! So after I updated last night we noticed that the bottom of Alex's incision was red. The nurse called the on call doctor who "poopooed" us and didn't even come look at it. I pointed it out to our pediatricia​n this morning and he was immediately concerned. This set off a chain of events. Where numerous people came in to look at it. The bottom line is that Alex has cellulitis (a bacterial infection) and a possible abcess. We are starting one of the two antibiotics we know we are okay with. If it does not improve or gets worse in a few days they will have to go in and drain it. Alex is okay as long as no one messes with it. It is very painful if someone touches it, but is okay otherwise. I also took the opportunity to talk to surgery about his leaking around the jtube. They said this is not normal, but they see it in people with severe motility issues. They are considering ordering him a special paste usually used for ostomies that should help protect his skin.

The pediatricia​n and I did make the decision to go ahead with feeds as planned. Unless the abcess needs to be drained or he gets "sick" from the infection we will trudge along. We started about 2 hours ago and seem to be doing okay other then some increase in the leaking.

Onc​e again we ask for your continued prayers as Alex continues to shine brightly even with all the struggles he endures. His smile and giggle can light up a room and certainly my world.

Ali

WOOHOO!!!!! The ileus is gone! We are so excited. The plan is to start sugar water at 5 cc/hr tomorrow morning.

We have had a great day. Our only complaint today has been some major irritation around Alex's Jtube. Alex has been leaking bile around his Jtube for days now and the skin is red and burned. We are keeping a lubricant/b​arrior on it and gauze, but he is very sore. Other then that feeling good all around.

Very specific prayers needed:

1. For our pancreas enzymes to stay low.

2. For the leaking around the Jtube to be minimal.

3. For a slowdown in our bile output.

4. For our itching to stay under control.

5. For Alex's skin around his Jtube to heal.

6. For us to be able to increase our feeds each day so we can get off TPN and go home.

A special thank you to our "new" friend Kristin. Kristin is someone I have "talked" to online for a few years. She moved to Houston a few weeks ago and spent the afternoon with Alex and I yesterday. Having some adult companionsh​ip was such a nice treat. (And homemade muffins are just as nice!!!) We can't wait to see you again.

We are so blessed to be surrounded by friends and family who love and support us. Thank you for lifting our spirits and keeping us in your prayers.

Ali

Things are once again on the upswing! Alex is still having some slight pain, but nothing too bad. We have been working on slowly weaning him off his pain meds. He has now been on fentanyl for a month so we cannot just stop cold turkey or he will suffer withdrawal. We are taking him down by 2 mcg/dose each day and it is working well. We should be done by Tuesday.

Our plan: Because pain meds can slow your motility we are holding until we are off the fentanyl. At that point we will repeat an xray to see if the ileus is also gone. Hopefully it will be and we can resume feeds at that point!

The only real concern we have right now is that his pancreatic enzymes continue to rise. If his pancreas flares we have no choice but to continue on TPN.

My prayers are for Alex to get back on feeds. Alex loves the summer. He loves the beach and the pool and the waterpark and all the fun the summer entails. He can not do any of these things if he is on TPN.

I continue to feel blessed by your support and love. Thank you for keeping us in your prayers.

Ali

Okay, here is my recap of the last few days...

Mond​ay afternoon we decided to start 5 cc's an hour of sugar water despite the agreement that we still had an ileus. Monday night he woke up several times in pain and also nauseous.

Tu​esday Alex did not feel well at all. He was nauseous and in pain and his overnight labs showed that his pancreatic enzymes were rising. Tuesday afternoon I finally went for lunch around 3:00. When I got back Alex was lying in his bed and Dr. Koenig was here. Alex had thrown up while I was gone. He proceeded to throw up two more times before the night was out prompting us to stop feeds. We all assumed it was his pancreatiti​s. We repeated his pancreas labs but they were actually a little lower.

Yesterday morning we restarted feeds at the same 5 cc's an hour. Alex was NOT himself at all. He was really clinging and cried everytime I walked out the room, even if i was only going to the nurses station. He was also really puny. Seaworld was bringing animals to the hospital and even that didn't perk him up. He layed in his stroller and wouldn't even sit up to see the animals. He was also leaking large amounts of fluid around his jtube. We were constantly changing gauze and we changed shirts 3 times.

Today we started out the same. The leaking and complaining of not feeling well continued. Around 10:00 we decided to once again stop feeds until we could determine what was causing our leaking and discomfort. Since that time Alex has had a better day. We are still not sure what is going on. We think there are 3 possibiliti​es: his ileus, pancreatiti​s, or a bladder infection. The place where Alex is complaining of pain could be a UTI. Alex's pancreas enzymes are once again higher, his urinalysis is questionabl​e and his abdominal xray shows some improvement but still an ileus. So we wait....

I a meeting with Dr. Koenig tomorrow afternoon to discuss our plan. I will update after that.

In other news...Alex'​s steri strips fell off his incision tonight and it looks AWESOME!!! As the nurse and I joked we couldn't draw a line that straight.

Th​ank you again for always keeping Alex and I in your thoughts and prayers. It really is a blessing!

Al​i

More to come tomorrow...​Rough last 2 days! Alex threw up 3 times yesterday and we had to stop our sugar water. We restarted today, but he has been pretty puny. We are unsure what is wrong right now. However, we will not be home this weekend as we had hoped.

Pleas​e pray for Alex to feel better. I promise I;ll post a better update tomorrow,

Al​i

Things have been okay! We stopped Alex's PCA pump of pain meds so now he has to ask the nurse for medicine when he hurts. Alex is not good about this so we have had some pain.

Despite Alex's xray still showing an ileus, surgery gave the okay for us to try some sugar water into his tube. He is doing pretty well. We had quite a bit of bile output (500 cc's), but we are replacing fluids. The only other concern is his pancreatic enzymes took a big jump this morning. We are hoping it is just a fluke and they will come back down.

There is some mention of us going home towards the end of the week if we can get some formula going. So keep your fingers crossed!

Ali

Things continue to go well! Alex is a little sore, but is walking (a little gingerly) and playing. He is finally over the last of the allergic reaction. He was on oxygen again on Friday, but last night and today he has stopped wheezing.

Alex has an ileus which means there is paralysis in his intestines causing a blockage. It is common after GI surgery, but Alex's is taking longer to subside then usual. This is what is holding up our feeds. Until the ileus passses we are in a holding pattern.

We had a great weekend with Daddy! Alex and Daddy played lots of tranformers and Mommy got a break to go shopping!!! Mommy and Daddy even got to go out to dinner two nights. It was good to be together as a family!

Hope​fully, tomorrow the xray will show the ileus has passed and we can start feeds!

Ali

Things continue to go well! Yesterday, Alex wemt for a ride in his stroller and even walked some. He loved being up and about. I didn't let him walk too far because I didn't want him to overdo it. We also weaned off oxygen yesterday morning.

Las​t night he gave us a little scare...Jen and I cam back from dinner to find Alex asleep and wheezing quite a bit. The respiratory therapist came in and we gave him some albuterol and he did okay. He needed some more albuterol this morning, but has been fine since.

I need to upload pictures, but the therapy dogs came to visit this morning and Alex was snuggling a little pomeranian.

The big news is that Daddy is on his way here!!!!!! We are so excited to see him.

I will update if anything changes!

Ali

We are having a WONDERFUL day!!! The swelling in finally subsiding. He is much more alert. He just is doing much better overall.

As I mentioned last night he was not keeping his O2 Saturations up. Around 9:00 we made the decision to switch from the oxygen mask blowing towards Alex's face to a nasal cannula. Immediately Alex's saturations were better. Between better oxygenation and the second dose of steroids, Alex has really turned the corner.

His pain is still pretty well controlled. We actually lowered his continuous drip of meds a little today. He was not happy, but we even got him to sit in a reclining chair for 45 minutes to help his lungs.

We did a stomach xray and depending on the results may be able to start feeds in the next few days.

Thanks for all the prayers and support.

Ali

For the most part today has been a little easier. Alex has been able to move his legs a little bit. He has tolerated me changing his diaper and wiping dried blood off his belly. He is pretty drugged up and slept 90% of the day, but was able to respond if we ask him questions. Surgery also let us pull his ng tube. That is the same tube through his nose that caused so much irritation last time.

We had two main setbacks today...One his right lung doesn't sound great. We have had to force him to change his position as we are trying to avoid pneumonia. The other problem is that since about 3:00 we have been dealing with pretty substantial face and tongue swelling. His tongue is swelling to the point where it is hanging out of his mouth. All of the doctors reconvened in our room this afternoon and we have given extra benadryl. We also made the decision to give a second round of steroids. At that point the doctors were comfortable watching his heartrate and oxygen saturations to determine his status. He was doing rwally well until tonight. I think he is deciding he doesn't want me to sleep because he is flirting with the low side of okay right now. Luckily a doctor we trust is on call tonight and very aware of the situation.

Please continue to keep Buggy in your prayers!

Ali

I cannot begin to tell you what all your prayers and kind words mean to me!

We had a pretty uneventful night. I got NO sleep, but Alex was stable and slept pretty well. He is quite heavily sedated between his pain meds, benadryl and nausea medication. Once he got his steroids we noticed improvement. By about 2 AM he started to look more like Alex not quite so swollen.

This morning we have had a few "allergic" flares where he will turn red and get really splotchy, but this is to be expected with the severity of reaction he had yesterday. His lungs sound a little better, but his lower lungs still have decreased breath sounds. They are talking about starting some more breathing treatments to stay ahead of it. Otherwise he is pretty much sleeping constantly.

I will continue to update, but Alex is out of the woods for now.

Ali

I am going to do my best to recap the day... The day started early. We were called for surgery at 6:00 AM. We were in pre-op until about 7:35. We headed back to the OR for what should have been about a 45 min procedure. They started anesthesia and I walked out the door at 8:00 with him asleep. At 9:45 I started to think things weren't going as planned because I hadn't seen the surgeon yet. At 10:00 I got a call from the OR saying that Alex was doing fine, but they couldn't get the tube placed. They decided to do a separate J tube at that point, but did not know whether it would be laparoscopi​c or open. They finally finished surgery at 12 and Dr. Tsao came out to talk to me. He had to open him up. He has about a 3 inch incision from his belly button up. The new tube is placed just left of his belly button.

The real "fun" started in the PACU (recovery). About 1:30 Alex turned tomato red. His heart rate was hanging in the 190's and his respiration​s were in the 50's. We also were using oxygen to keep his saturations at a good level. But at this point we thought he was just in pain. At 2:00 the anesthesiol​ogist got one look at him and ordered benadryl. We came back to our room at 3:00. His face was starting to swell by this point and he was tomato red except just around his mouth which was white. At 3:30 the swelling was getting worse and I asked for another dose of benadryl. Dr. koenig cam in shortly after and that is when the you know what hit the fan! She immediately started barking orders and got on the phone with Dr. Pacheco our allergist/i​mmunologist. His heart rate stayed in the 190's this whole time and he was laboring to breathe. His lung sounds were diminished and his appearance continued to deteriorate. We drew a number of labs, did a chest xray, gave him albuterol, gave yet a 3rd dose of benadryl, started a steroid and kept our eyes glued to the monitors. The discussion ensued about whether to use epinephrine. But with his heart rate already so high, the doctors felt the risks outweighed the benefits. The decision was made to bolus large amounts of fluids into him. Within an hour, he got 600 cc's of extra fluids. The labs revealed that Alex's lactic acid was once again high at 3.1. Dr. Koenig quickly ordered D25 because sugar can sometimes help your lactate. Around 6:30, his heartrate was down to the 160's and Dr. Koenig felt comfortable to leave. Dr. Pacheco stayed about another 45 minutes. Since then it has been a constant stream of Dr's and nurses. The PICU doctor is checking in every couple hours. We are just getting ready to check labs again.

At this point we are stable, but still cautious. His airway is swollen and his cough or cry sounds yucky. He also has a rash, but is otherwise doing well. He is looking better with each passing hour.

His pain is pretty bad, but controlled with the pain meds.

I will update again in the morning.

Tha​nk you for all the prayers.

Ali

Please pray for Alex...

I will update details later, but Alex wound up having open abdominal surgery this morning and then had a very severe anaphylacti​c allergic reaction after surgery. He is stable at this point, but we are watching very closely.

Mor​e later...

Ali

Today was the best day we have had in a while! Alex slept well last night and felt good all day. We are ready for surgery in the morning. We are scheduled for 7:30 in the morning and it shpuld be relatively fast.

Jen and I went and got our hair cut today. It was so much fun to get out and spend an hour being "normal". We have both had a rough last couple weeks so it was time to treat ourselves to some fun.

I was disappointe​d to learn yesterday that our elementary school has decided to do full dat kindergarte​n next year. (Thanks Melissa for the heads up) As you all know Alex sleeps all afternoon so half day kindergarte​n was a great fit. Dr. Koenig and I talked today and she does not feel like Alex can do all day. She will be writing a letter to the school stating that he can only attend for half days. We knew this would be an issue in first grade, but we were hoping he could do all of kindergarte​n. Once we are home I will meet with the school again and get all of our accomadatio​ns set. Then once he is in school we will reevaluate. Hopefully, his energy level and immune system will hold up.

I will update after surgery.

Ali