We had a decent weekend. One of our favorite nurses worked Sunday and Monday so that always makes for a better day. Unfortunate​ly our 2 favorite nurse are both on vacation until we come home (hopefully).

Medically speaking not much to report... Alex's feeds are up to 50 cc/hr of half strength formula. His belly is really distended, but not hurting him so we are just watching for right now. I am praying we continue to progress. It looks like we will be getting another blood transfusion in the next few days. Alex's hemoglobin and hematocrit are low and he is pale as a ghost. We are waiting to see what tomorrow morning s labs look like. (We run labs Mon, wed, and Fri mornings).

A wonderful, generous woman Joan, came and cut mine and Alex's hair last night so that was a really nice treat. She brought her 19 year old son and Alex had a blast playing with him. They even played the Wii.

Other then that things are pretty much the same. I will update tomorrow.

We have had a rough few days, but in a very differnet sort of way! Alex's belly is doing great. His ammonia levels are holding steady. All of the normal culprits are under control.

Yesterday, Alex was visiting his buddy Andrew. He was riding on a little ride on toy. As he rode into Andrew's room he flipped over the front of the toy and landed face first on the tile. He was bleeding quite a bit from his mouth but wouldn't let us look to see where the blood was coming from. He soaked awashcloth with blood. I finally calmed him down enough for him to tell me his lips hurt not his teeth. Needless to say his lips are all swollen. We tried to get a look overnight, but everytime we toughed his lip he flinched and swung his head around. We know he is sore, but it hasn't slowed him down at all. We gave tylenol twice yesterdya and will give him some at bedtime tonight to make sure he is comfortable. I guess after all these weeks he thought we needed alittle extra excitement.​
Then today we had a nurse that is unfamiliar with Alex and her trainee. Two separate times they messed up Alex's medications and almost did a third time, but I caught it. This is completely unacceptabl​e. A mistake like this could be fatal in a child like Alex. Luckily we are already double dosing him on antihistami​nes because of his rash. Luckily, this saved us from a potential severe allergic reaction. I complained to the charge nurse and requested that I PLEASE have one of my "regular" nurses tomorrow. I felt like I couldn't turn my back for a minute. I do not want to have to do that all weekend. We will see what happens tomorrow.

Ot​her then that things are good. We have our favorite night nurse for the next 3-4 nights so that means Mommy will get some sleep which always makes me happy.

About two and a half weeks...

Ali

Today has seemed like a long day! Some days just drag more then others and today seemed long (but not bad).

On a good note all three of our very favorite nurses worked today so Alex was as happy as could be to have "his" girls around. We also have several friends that are inpatient with us so we have been visiting. Andrew is here having a muscle biopsy to diagnose a mitochondri​al disorder and Nicholas had a new tube placed. Alex loves having friends around to play with.

We saw Dr. Pacheco today. She is our allergist immunologis​t and is also doubling as a pulmonologi​st right now. She came to see Alex's rash and talk about his risk of aspiration. For his rash we are going to add another medecine. We are already doing benadryl every 4 hours and hyrdrocorti​sone cream so we will add one more. She will also recheck all his immune labs. As for pulmonary had we continued feeding in the G tube their recommendat​ion would have been to have the reflux surgery, but because we are feeding i the J tube he is not refluxing so we will not need to do that.

Dr. koenig, Dr. Pacheco and Dr. Rhoads (GI) met and they do not feel that we wuill ever feed into the G tube again. Alex's motility is so poor and his reflux so severe that it is not worth it. They have also decided that we will not let Alex eat any food for the next 3 months. At that point we will reassess whether to let him have his 4 foods back. Alex has completely stopped asking to eat, but I worry about going to playgroup and parties and out to eat with no foods. I am sure Alex will prove me wrong for worrying he is always so amazing.

He continues to charm his way through the days. With a smile on his face and a giggle for his friends.

Ali

Things are trucking along. We are still creeping up on our feeds. We are going up b y five cc's every other day. My best estimate is that we will be home mid October. Alex is doing well. He is pretty cranky on the day that we increase his feed and then he stabilizes the next day. He is not having any belly or leg pain at this point. He is still really itchy and has a rash, but we'll take that. We have continued to have some blood pressure and temperature issues overnight, but they are part of Alex's mito.

Landon continues to need your prayers.

Ali

Oh I forgot... We are not going to the zoo. The hospital said that insurance will not pay anymore if we go plus liability blah blah blah. Our ped team felt really bad. So they contacted the zoo and the zoo is going to try and bring some animals out here to see Alex on Monday.

Ali

Sorry it has been a couple of days. When Alex has irritable days it really takes its toll on me. It is exhausting and there is no way to get away from it. Because we have so muc trouble controlling his ammonia we are now bumping his rate one day and then holding a day to give his body a chance to adjust. It just means we are stuck here that much longer. He had a pretty good day yesterday until last night. We were trying a new laxative to replace miralax. It is supposed to bind ammonia so we thought it might be really beneficial to Alex. Well, it bloated his little belly so badly his was miserable. He cried and fussed and screamed for 2 hours at bed time. Needless to say we WILL NOT be using that again.

Pleas​e say extra prayers for Landon today. Hr is getting his new central line. If this line gets infected they have no options left. There are no more places to put one. It is literally his life line. Understanda​bly, a scary day for Jen and the whole family. Pray for me to have the strength and peace of mind to say and do the right things to be there for her.

Ali

Things are going okay here. Alex's belly is doing really well on half strength feeds. his ammonia levels are starting to rise again and that makes him irritable. We are at 20 cc's an hour of half strength formula. We will keep everything the same tomorrow and see if his ammonia levels stabilize. The plan is to increase to his goal rate of 55 cc's an hour while at half strength formula and then try to increase the concentrati​on until we get to full strength. So far this is the most progress we have made.

I am really struggling with the nurse situation! Who our nurse is can completely influence whether we have a good or bad day/night. For the most part we are ecstatic with the day shift. Other then one or two days we have had the same group of nurses who have been so wonderful to both me and Alex. The problem has been overnight. We have wound up with new and/or training nurses foir several nights. They are perfectly nice, but unfortunate​ly when they aren't comfortable with everything they turn on ALL the lights every time they come in and if they are training they talk. So Alex and i are gettting no sleep. The other issue is with the overnight PCA's. Several of them were repeating Alex's blood pressure up to 8 times in a row overnight and his temp several times as well. Needless to say Alex is now not wanting to have his vital signs done. And those of you that know Alex and I know how crabby we are when we don't get enough sleep. We have put signs on the door with reminders about how low Alex's temps and blood pressures are overnight and asked to be respectful about lights/talk​ing, but we are still having ttrouble. i am praying that this improves because it makes such a difference in how i feel and cope with being here.

Landon is still holding his own. The plan is to extubate in the next few days.

On a positive note...I have convinced Dr. Koenig to give us a day pass for a few hours on Saturday. We are going to go to the zoo. We will probably be allowed to be out for about 3 hours. We are so excited!

Ali

We are having a really good day! We switched to half strength feeds last night. We were able to get to 15 cc/hr in the J tube today with no stomach pain. He is playing and his spunk is back.

The only bad thing is that Alex's back, shoulders, and chest are covered in a rash. He has had it for a couple days, but despite benadryl and hydrocortis​one cream it continues to get worse. We don't know what he is reacting to. Poor baby is so itchy!

Thing​s are getting back to normal around here. The nurses and doctors are gettting back on regular schedules. Unfortunate​ly, the city is still a complete mess.

Landon is holding his own. He is still on the vent, but plans are to come off this weekend.

We still do not know when we will be home. My best estimate is in 2 weeks. I am so sick of the hospital. I am just bored and ready to be in my house and my bed. Alex has been such a trooper through all of this. He has had his moments, but being in the hospital for a month could make anyone irritable. He loves "his" nurses and seeing his "friends" (the child life girls). He is spoiled ROTTEN, by everyone here.

Thanks to everyone who has sent cards, packages, and called or emailed words of encourageme​nt. They really are appreciated even if I can't always let you know. Please keep the prayers up.

Ali

Pretty boring the last few days. Alex is still having stomach and leg pains everyday. We have decided to try half strength formula to see if that can help. Other then that things are still the same.

Ali

We weathered the storm and are just relaxing. The hospital sustained some damage but we were safe the whole time.

Alex is hanging in there. Same old Same old...his belly would much rather not be fed, but we cannot stay on TPN forever without causing liver damage. Dr. Koenig and I hate this because he looks and feels so much better on the TPN. We are just creeping up and hoping to gain some ground. Unforunatel​y the slower we go the longer we are stuck here! I will do whatever is best for Alex though. We conintue to be surrounded by the most warm, loving poeple. Alex has them wrapped around his little fingers. Every time I leave the room and come back he has found someone to invite in to chat with. He loves tp push the nurse call button and harras his nurses. He plays tricks on the new nurses and convinces the doctors to take him on the staff elevators. He is so full of life and spunk which is so good to see around here.

Landon is sedated and resting comfortably. The plan is to let him rest for 7-10 days before trying to get him extubated. They continue to need your [rayers.

Ple​ase pray for the families in the area. Several of our facorite nurses lost houses. Dr. Koenig sustained damage to her house. The whole area is a mess.

Ali

So far we have seen very little effect from the storm. The bad part is just ahead of us. We are prepared and anticipatin​g the wind and rain.

Alex had an off day today. He ran a low grade temp, had high blood pressure and didn't want to walk. We are hoping it is just coincidnce and has nothing to do with starting feeds. I will keep you updated.

Ple​ase keep Landon, Jen and their family in your prayers. landon has taken a turn for the worse and is being moved to the PICU to be placed on a ventilator. The hope is that it will allow his body to rest so it can better fight this nasty infection.

We are hunkered down and prepared to survive Ike tomorrow! Buggy's first hurricane.

A​lex is doing really well. He has had a low grade fever since surgery (which we completely expected), but feels good. We are starting feed into the J part of his tube ( his small intestine) tomorrow at a very slow rate. Dr. Koenig insists that we have to take it one day at a time. They cannot make any predictions about if this will work or how fast we will be home.

Landon is VERY sick. Please keep jen, landon and there entire family in your prayers.

Ali​
PS- There is a good chance we will lose internet and phone service so if you don't hear from me I will update as soon as I can.

Alex is out of surgery and doing well. We are back in th room and just relaxing.

landon is also doing okay.

Thanks for the thoughts.

Al​i

Two quick prayer requests...​
1. Buggy's surgery is scheduled for around 12:30.

2. Landon spiked a fever of 103 last night. Jen is very worried and stressed. They were set to go home on Tuesday after 60 days here.

I will update later today once we are back to our room.

Ali

Last night was pretty good!!! Alex fell asleep around 10:00 and slept till 8:45 this morning. I git to sleep in a real bed. Jen (Landon's Mom) had gotten a room in the Ronald McDonald House that is right on our floor. It is normally only for ICU parents , but b/c Jen and Landon have been here so long they made an exception. Jen was gracious enough to let me sleep in the room last night. I fell asleep around 11 and didn't open my eyes until 5:30. It was much needed.
Jen and I are having a rough morning. One of the PCA's (who check vital signs) does not like us and is giving us a hard time. She has complained about us. We have no place to eat. They won't let us eat in the waiting room, we can't eat in the boy's room b/c it isn't fair to them and now they won't let us sit in the hall at the end of the nurses station. We have to stay on the floor b/c doctors are constanlty rounding and need to see us. It is just really frustrating.​
More later after we see the doctors.

Ali

We are continuing to have trouble sleeping. Every naptime and bedtime is a fight. It is so hard for me to adjust to having my good sleeper struggle to fall asleep. I am nearing the end of my tank. I desparately need a good night's sleep to recharge. The main problem is Alex's legs are restless and hurting. We finally have a prescriptio​n tonight if it does not get better.

Alex also has a rash on his upper back, neck and ear. We are not sure what he is reacting to but it is his typical allergy rash.

SUrger​y to switch Alex's gtube is scheduled for Wednesday. I do not have a time yet.

On a good note...Alex got a hair cut on Sunday. He looks so much better. Then today the child life girls took him on a field trip. We got to go up to the roof to see the life flight helicopter. It was SO COOL!!!!! We even got to sit in the pilot seat. As soon as I get the pictures I will upload them!

Please pray for calm unhurting legs and sweet dreams tonight.

Ali

Pretty uneventful day...just a lot of sitting around and movie watching. Oh and a BIG PIRATE WIN!!!! Hopefully tomorrow will go quickly.

Ali

The power of prayer is a good thing! Alex had a great night last night. Let me back up...Alex started having diarrhea again yesterday. Finally late yesterday afternoon Dr. Rhoads our GI decided to drop Alex's feeds to 10 cc's/hr. Low and behold the poops stopped (which I knew they would) and not only that but his ammonia levels dropped by half over night. Alex slept from 9 last night until 10:30 this morning. He had a great day. He finished up his EEG around 1:30. He had Physical Therapy around 2:00 and then played football in the hall wiht his nurse and a few doctors for a little while. By the time 3:30 rolled around and we gave him a bath and hooked his TPN and feeds back up he was wiped put. He was sound asleep by 5:00! I asume he will sleep until around 6:00 tomorrow morning.

We have been so lucky to have our favorite nurses caring for us day after day. It makes our days so much more enjoyable to have people we like surrounding us.

The weekend is once again upon us and that is always hard. The days seem so long when there are no doctors or tests to break it up. Alex and Landon are gettting there haircut on Sunday afternoon so that should be good.

Thanks for keeping us in your thoughts and prayers.

Ali

A pretty quiet morning this morning! Last night was another hard night. We finally understand Alex's irritabilit​y and trouble sleeping. His ammonia levels continue to rise. It is caused by Alex having trouble metabolizin​g the TPN. However, he needss the TPN for his nutrition so we are kind of stuck. Dr. k feels pretty strongly aboutn not giving Alex anything to help him sleep since we know the reason for it and we know what a GREAT sleeper he is at home. However that leaves both of us really exhausted. We only got 4 hours of sleep last night. His legs will not settle down to let him rest. Poor baby.

We are having a 24 hour EEG today to watch his brain waves and see if we catch any seizures. We are expecting it to be completely normal. Dr. K and I both think that Alex will have seizures when his body is very stressed or he is getting sick, but noth normally. We will not treat them if this is the case.

Alex's surgery to change his button is scheduled for next Wednesday. We will be discharged sometime the following week.

Please continue to pray for us. Specificall​y for Alex to be able to rest so we will both feel better.

Ali

Oh,I forgot...

A lot of people have asked for our address. It is:

Alex Beckwith

Chi​ldren's Memorial Hermann Hospital

641​1 Fannin St

9th Floor Room 23

Houston, TX 77030

Also, for those of you who have called please be patient if I haven't called back. We have so many dr's and nurses in and out that it is hard for me to get any calls done.

Ali

We are still sitting tight. We had a complicatio​n come up today. We have been watching Alex's blood counts the last few days. Alex is always anemic, but his counts have been dropping the last few days. Well after this mornings labs his counts came back extremely low. We wound up having to do a blood transfusion this afternoon. Alex did great. We have watched him really closely to ensure that his temperature​, blood pressure, and heart rate were okay and he has been fine. We have been fine all afternoon. We will be done in 45 minutes.

I will continue to update.

Ali

My sweet angel was so good all day yesterday. All of your thoughts and prayers must have worked yesterday!

A​lex had a gastric emptying scan yesterday. Basically a test to see how fast his stomach can empty. His belly should empty fluids in about a half hour. After 90 minutes, Alex's stomach had only emptied 3% of his 4 oz of formula. This explains why we have so much stomach pain and why we can't increase our feed rate.

The plan is to put in a different tube that bypasses his stomach and goes directly into his small intestine. We are not sure if this will fix the problem, because we don't know if his motility is any better farther down the GI tract, but it doesn't hurt to try.

We will be here at least into next week.

Love you,

Ali

Feeling a lot better although still exhausted! My sweet angel is back and his evil twin has left the building. Coincidentl​y it happened when we backed down on his feeds and then stopped them all together. We think he isn't verbalizing when he is in pain. The question becomes what to do about the feeds. I will update again once we see Dr. Koenig and have a plan, but I did wan to let you know that things are looking up. All the prayers are working...K​eep them coming.

Ali

Wow it has been a rough few days. I am asking for everyone to please pray for both of us. I am at my breaking point. I am not sure what is wrong, but Alex is not himself. We are not sure if it is medical, behavorial, frustration​, pain, lack of sleep or all of the above but he is just not right. I have seen glimpses of my sweet angel the last few days, but I have seen more moments of a child I do not know and it has not been fun. Alex will can not sleep, he is hitting, kicking, throwing, yelling and he physically attacked me and sratched my neck down both sides yesterday. We are almost positive their is a medical cause behind this beciase it is so out of character, but it is so hard. I have just had to walk away numerous times. Thank goodness Jen is here. She has calmed his down numerous times. It has boiled down to pain a few times and a fever after the bad incident, but we don't what the "main" cause is. I am just exhausted and have knots in my stomach. I am so anxious for Dr. Koenig to get here this morning.

Ple​ase pray for me to have patience and kind loving words for Alex and for him to be able to tell us what is worng.

Ali