Sorry I didn't update yesterday!

O​ur appt with anesthesia was pretty much a waste of time. He has been under so many times at this hospital they have a pretty good idea of what they can and can't do. I was able to request our favorite anesthesiol​ogist. She is going to do it so that made me pretty happy. We also drew blood. Alex's hemoglobin was okay. He is VERY pale. Even his lips don't have much color. I have no explanation​, but I am keeping a close eye on him.

Today Alex and I had a really nice day. We spent some time, just the 2 of us at the zoo. The weather was perfect! It is 70 degrees and sunny. We had a ball seeing all the animals and just enjoying each other. It was a great way to spend tiem before being caged again!

I will update Monday once we are settled in a room following Alex's ERCP.

Just wanted to let everyone know we got here safely! Alex is having a ball in the hotel room. He looks pretty pale, but I am hoping he is just tired from travelling. He didn't sleep in the car so he had no nap today. I have emailed Dr. koenig to see if she wants to check any blood tomorrow when we are at the hospital. I will update after our appt.

Ali

Just a quick note...We are leving this morning for our extended stay in Houston. We will be in a hotel until Monday morning and hten admitted Monday following Alex's ERCP.

Please pray for safe travels!

Ali

I just wanted to let everyone know when we are leaving. We will be going on Thursday. We have an appt with anesthesia on Friday and then we have the ERCP on Monday. There was a little mix up with the GI dept so everything was scheduled outpatient. Dr. Koenig and I decided rather then try and change things and risk having the appt pushed back, we would just do it outpatient and then she will admit Alex following the procedure. Luckily we still have some Hampton Inn points so Alex and I will be staying in a hotel through the weekend

All good things must come to an end! And so it is for our time at home. Alex and I have really loved being home and getting back into a routine. Unfortunate​ly, I got a call friday morning letting me know that the ERCP (Invasive Pancreas test) will take place this week. I do not have an exact day of departure yet. I am trying to quickly get everything in order here and get packed up. We are expecting to be inpatient about a month. To recap...Aft​er the ERCP, we will wait to see if his pancreatiti​s flares. If so, we will wait for that to settle down. Then we will do a surgery to place a seperate J tube and make any revisions to his pancreas, and possibly take out his gallbladder. Once he is healed from surgery, we will attempt feeds. If his pancreas does not immediately flare, Dr. Koenig will allow us to come home and continue working on progressing his feeds here. With the ultimate goal of getting back on J tube feeds and off TPN.

Please continue to keep all of us in your prayers especially Bruce and his continuing Job search.

Things continue to go well here! When we reran Alex's triglycerid​es they were still VERY high (372) so I feel like we made the right choice in changing his lipid schedule. He is having some belly pain and his belly is extremely distended. But nothing we can't handle.

We got to go to playgroup this week. Playgroup is so special to both Alex and I. It truly is our safe haven. Alex is so happy and comfortable with his friends. They have only known Alex as he is so they think nothing of his tubes and wires and smelling food. They accept him completely as he is. And that is so wonderful for me to see. I know he won't always encounter people who take his medical issues for granted like this group does. My favorite story to illustrate this happened when Alex got his first feeding tube. At our first playgroup, Alex showed the kids his "new way to eat". Dillon proceeded to go home and tell her Dad that "it wasn't fair that Alex could eat right through his belly and she wanted a tube". Out of the mouths of babes! As for me, having time to hang out with the girls and act like a "normal" mother is such a nice break from the usual craziness that is our life. All around it is just a really important part of our life that we dearly miss when we are in Houston. I hope you girls know how much your friendship is appreciated.​
As for Bruce, the job hunt continues. We are sending out lots of resumes and praying a good opportunity comes along.

The wii olympics continues! Currently I am kicking Bruce's butt in golf and bowling and he DOES NOT like it! Poor Guy he has to hear it from me and Alex. I am also loving my Wii fit. I am doing at least 30 min a day. Thank you Santa (aka grandpa) for our wii. We are sure putting it to good use!

I have had a few people ask about Samuel. He is doing wonderfully! The doctors at TCH have said he is a true miracle. There is no medical explanation for how he is alive, much less doing as well as he is. He is off the heart lung bypass, off the ventilator, breathing on his own and out of the PICU!!!! Missy and Ben are seeing some changes, but are thrilled to be able to hold their little boy. I can't wait to get back to Houston to hug them all again. When I left things were still pretty tenuous.

Whoo! I think that is all! Thank you for always keeping us in your prayers.

Ali

We reran Alex's triglycerid​es yesterday morning, but unfortunate​ly they did not come back yet. The GI team decided to go ahead and reduce his lipids to only 3 days/week instead of every day. I feel good about this decision since Alex's triglycerid​es have been consistentl​y high since November despite lowering his amount numerous times.

We are still waiting on our return date to Houston.

A little more about our fundraiser... It is put on by the president of the Houston chapter of the UMDF who is a very good friend of Dr. Koenig's. She lost her little boy to mito several years ago. Dr. Koenig approached Jen and I about walking in this event. It is a 5K walk/run. It will take place in Houston on February 7th. Dr. Koenig will be working hard to get the boys out of the hospital for the morning so they can walk with us. Obviously this is a cause that is very close to our hearts. We are really excited about participati​ng and are blown away by the generosity of you our friends andfamily!

Well you know Alex likes to keep them on their toes!!!! Overall our labs looked great. His blood counts were awesome! It helps to get a transfusion right before you escape from the bloodsuckin​g hospital! His pancreatic enzymes are the lowest they have been in months (although still not normal). So we were pretty happy.

The only glitch was his triglycerid​es. We have been struggling with his triglycerid​e level for some time and have continually lowered the amount of lipids (fats) he is getting with his TPN. Well they came back yesterday at 442!!! Extremely high. We are rechecking them this morning to see if it was possibly a lab error. Once we get them back we will consult with GI once again.

Other then that we continue to wait for the date we are to return to Houston, but believe it will be the first of February.

Th​ank you so very much to those of you who have generously donated to our fundraiser. Every penny is a step closer to finding a cure for Alex. It is greatly appreciated!

Things continue to go well here! I don't even have much to update...

Al​ex is having fun at home. The hard part is just being hooked to his TPN and lipids for 24 hours a day! We are staying close to home as Dr. Koenig is worried about him picking up something else before our surgery. We run labs tomorrow and call to find out when we should head back, but that is about it!

Bruce continues to look for a job. We are praying for him to find something in a timely manner before we start to really feel the strain of no income.

In the meantime, we are enjoying family time. We are making good use of the wii and wii fit Santa brought us. My family has dubbed it the "Wii Olympics" at our house as Bruce and I are competing for top billing.

Please remember to consider sponsoring us for our fun run on February 7th. The link is in the "my story" section at the top of the page. All proceeds go to research to find a cure for mito.

Ali

Sorry for the slow update!

We are home safe and sound. As always, Alex is thrilled to be home and surrounded by his things. He is sleeping great. He slept until 8:00 yesterday morning and 9:15 this morning. I think he likes his bed and peace and quiet!

I am settling back in. It is always a challenge to catch up on cleaning, laundry, mail, bills, etc. I am just about caught up.

Unfortun​ately, we got more bad news yesterday. Bruce's "new" company closed its doors and he is once again without a job. Please pray for us as this is a scary time. Bruce is focusing his search in the Houston area as having the family separated has begun to take a toll on all of us, especially Bruce.

Medic​ally, Alex is doing great. He feels good. He is having no pain from his Pancreas right now. The only problem we are experiencin​g is severe hypoglycemi​a. It is so hard for a 4 year old to be attached to tubes for 24 hours a day. Yet each time we try to give a 30 minute break his blood sugars plummet.Yes​terday morning his blood sugar was 29 after 30 minutes off. We continue to try, but it just isn't enough time for him to run and play.

I also had my first meeting with the school that Alex will hopefully attend in the fall. They were very nice and know what a miracle it will be for us to keep Alex safe and healthy in school. They are willing to do whatever they can to make this dream come true. The plan is to meet in May or over the summer and put a ton of accomodatio​ns in place for this to happen.

We should be home until the beginning of February. Praise God!

Ali

We will head home in the morning! Alex got his blood this morning and did great. We are getting a dose of lasix tonight to help with his fluid retention. The plan is for us to come back the first week of February. We will "tank up" for surgery as Dr. Koenig puts it. basically we will make sure he doesn't need blood or anything else based on his labs. Then we will have our first surgery. That one will be an ERCP. They will go in by endoscopy and look more closely at Alex's pancreas. If anyhting small needs to be fixed they can do it through the endoscope. Then we will wait a few days and see if his pancreatiti​s flares (a possibility with the ERCP). Once we are sure his pancreas is okay we will have our second surgery. This will be his J tube placement and if they need to do more extensive surgery on his pancreas. They are also considering removing his gallbladder during this surgery. Our next stay will be quite long. After Alex recoups from surgery we will try and get back on J tube feeds and off of TPN.

I will update tomorrow once we are home.

Prayer​s for safe travels appreciated!​
Ali

This will be short...It'​s past my bedtime!

Tod​ay was one of the most frustrating days I've had in the hospital. The residents this month are not as good as the previous months. Across the board they just are not on top of things. It is a struggle I have been fighting this whole stay. They just are not assertive about getting things done. Two things needed to happen for us to come home tomorrow according to Dr. Koenig. One, we needed to meet with the surgeon and two, we needed a transfusion. Neither has happened. My frustration though was about the transfusion. As i posted yesterday, Alex has been having trouble with his blood sugars. After a very short time off his TPN he is becoming extremely hypoglycemi​c. In order to transfuse, we have to shut off his TPN. Early on today we discussed the fact that this transfusion would be difficult. We had two options. We could start a regular IV to run dextrose through while we transfused or we could montior blood sugars and stop the transfuse to bolus dextrose as needed and then restart the transfusion. I agreed to allow them to start an IV, but told the nurses I would not allow Alex to be stuck more then a few times. So needless to say after 4 sticks, it was determined we could not start an IV. Not really a shock this is precisely the reason we have a port. The nurse called the doctor to get the go ahead to use our backup plan of bolusing dextrose as needed. She would not allow us to start the transfusion. Her reasoning....​She wants Dr. Koenig and the pharmacist in the building. Mad does not even begin to explain my feelings! A transfusion takes 4 hours once the blood gets up here. Then we have to watch Alex for a little while to make sure he is reaction free. So we won't be home until very late tomorrow or on Tuesday.

In other news...Jen, Missy and I have decided to start a team to walk in a fundraiser to raise money for a cure for mito. More info to come in the next few days, but I hope you will consider sponsoring us as we fight to give our boys the best chance at life.

Ali

Things are pretty much the same. Not much to update. They had wanted to increase Alex's protein in his TPN. Well, we already know Alex doesn't process protein correctly. His body doesn't metabolize protein correctly so it turns into ammonia. High ammonia causes extreme irritabilit​y. We were going to make the increase in 2 jumps. Well we made the first increase and his ammonia skyrocketed so the doctors decided to not increase anymore. The only other change they may make is to decrease his lipids. His triglycerid​es are extrememly high.

We are waiting to see surgery. That needs to happen before we can come home.

We also need to see about a blood transfusion. The only other change is that Alex's blood sugars have flipped back to our old ways. If we let him off TPN at all within 30 minutes his numbers are in a dangerously low range. We are continuing to try because he needs the time unhooked to be a little boy.

Thanks to everyone who continues to support and pray for us.

Ali

We got the results of the MRCP. There is a small problem with the ducts in Alex's pancreas. There is a surgery they can do to try and correct it, but they cannot guarantee that is what is causing Alex's pancreatiti​s. So we will attempt to fix it, but we will have to see if it helps. I am waiting on an adult GI who specializes in pancreatits to come see me and explain more.

In the meantime, we will be here through Monday. Dr. Koenig wants one more test done and we will probably need another transfusion. We are also making a slight adjustment to his TPN and they want to watch and see how he does.

I think that is all for now.

Ali

Alex had his MRCP this morning. (anethesia couldn't fit us in yesterday) It took quite a bit longer then I anticipated! We went down about 8:00. I stayed with Alex until he was asleep. About 8:45 I headed out so they could intubate him. I was not called back to the PACU until 11:30. I am anxiously awaiting any results.

Our labs look pretty good at this point. So I think as long as nothing needs to be done based on his MRCP we should be able to head home in the next few days.

As for Samuel...He is still in critical condtion. He is on a heart lung bypass machine. Please continue to pay for the Knight family as Samuel fights for his life.

Ali

More prayers needed....

I spent most of last night in the room of our good friends, Missy and Ben. Samuel came in a few days ago with a central line infection. He got extremely sick yesterday and has been transferred to another hospital to the ICU. He is fighting for his life and things don't look good. PLEASE pray for this family and sweet Samuel.

Ali

P​S- I'll update on Buggy later.

I have had a rotten day! Every once in a while there is a day when I am just plain sick of all of this and today was one of those days.

Alex's port is once again not working correctly. Surgery came to look at it , but were not very helpful. We are going to once again TPA it to try and get blood, but that doesn't help me when we get home.

We are doing the MRCP tomorrow under general anesthesia. Hoping that gives us some answers about his pancreas.

GI was not very helpful at all today. There was a new GI on service and he wanted to try a bunch of different things that I don't agree with. Luckily for now we are holding off on most of these. Although they are going to mess with his TPN when I don't think they should.

We have two other concerns right now. Alex has been sleeping quite a bit the last 2 days and he seems to be retaining fluids, but we aren't sure now. We are trying to determine if he is getting sick again or if it is being caused by the pain meds he was taking for his pain.

We need some major prayers for Bruce and his job situation right now. The company Bruce went to work for was not honest about the pay structure. We just found out that it is not going to work out so he is once again looking for a job. Please keep your eyes and ears open and let us know if you hear of anything.

Al​i

Not a lot new to report today! The main problem now is Alex's pancreas. His numbers are rising daily. We cannot go home with his numbers rising. At this point he is also in quite a bit of pain. We actually are pretty sure that some of his oxygen problem is that he is in so much pain he is not breathing deeply. So at this point we also have him on painkillers. Dr. Koenig feels like we need to do the MRCP (specialize​d MRI of pancreas) while we are here. So I am not sure how long, but at least a few more days.

On a positive note...Dr. Koenig came and hung out with us for about an hour today. Alex was loving on her. They played a game and snuggled and just had a really nice time.

Thanks for all the prayers.

Ali

Alex continues to improve daily. We have had little setbacks, but overall he is so much better then a few days ago.

We had to put Alex back on oxygen last night. He is fine when he is awake, but is struggling when asleep. Dr. Koenig is hoping we can go home without oxygen. We are going to watch him a few more days. If on Monday she is comfortable with everything else she but he still needs oxygen at night she will send us home with it.

There is now only trace protein in his urine. This is great. It means that it was strictly because he was sick and his kidneys are working fine.

His platelets also continue to come up. While I did not like hematology (and Dr. K was well aware of this by the time she saw me) she feels they are good at what they do. Apparently even though they didn't tell me anything, they had quite a few suggestions that they discussed with her. As long as she is in the loop and they are communicati​ng that is fine with me.

The pediatric team willingly ran the LDH subclasses this morning. The results are not back to us yet.

The general consensus is that our biggest concern right now continues to be Alex's pancreas. The general belief is that he has had pancreatiti​s longer then any of us knew. He is in another bad flare right now that was sparked by the flu. We need his pancreas enzymes to come down before we can continue with plans for GI surgery.

Our pediatric team thought we might get to go home tomorrow, but Dr. Koenig thinks he still looks pretty puny and just wants to watch him for a few more days.

I am struggling with a nasty cold, but definitely not the flu. The clinical pharmacist who we love brought me some sudafed hoping that will help.

Please pray for Alex to continue to heal. Also, for me to keep my strength up so i can care for him

Ali

I am really frustrated with a doctor today so i figured rather then sit here fuming I would post my vent and let it go!

The lab that was abnormal this morning was LDH. It tests for breakdown of cells or muscles. It was run to see if he was hemolyzing (or breaking down) his red blood cells causing his anemia. The high end of normal is 160. Alex's was 1796. Basically extremely high. When I did some research, I found that this test has subclasses you can run that help determine where the breakdown is happening...​heart, liver, RBC, or somewhere else. One of the things that can cause the LDH to be high is acute pancreatiti​s. Well, I just spoke to the hematologis​t, she refuses to run the subclasses because she does not feel it is coming from the blood cells. I explained the concern over Alex's pancreas and that this test could be helpful if we knew it was elevated b/c of his pancreas. She didn't care. She said her specialty was blood and she didn't feel this was from blood so she wouldn't order it. End of Story. I do not think very highly of a doctor who would let a lab value that is 10 times normal go "because it is not their specialty". Doctors are supposed to treat patients. It would have been no skin off her back to run this test. She just didn't care enough. I will ask Koenig or Gi about doing the subclasses, but it just urks me.

Ali