Alex and Maddy

Alex and Maddy

Wednesday, December 31, 2008

Here is this afternoon's update...Al​ex is seeming to do better each day, but we cannot kick this fever! His last temp was 102.7. We will not be allowed to come home until his fever is gone for a few days to be sure we are over the hump.

We repeated a urinalysis and while he is still spilling protein there was a little less. We continue to hope that the protein is strictly because he has been so sick. His Kidney blood work looks fine so we aren't overly concerned about this.

Hemato​logy came by. They are running a number of blood tests now and then will run more blood work before our next transfusion. They can't run some things now because it wouldn't be accurate because we were just transfused. After we get the blood work back they will determine whether we need to follow up with a bone marrow biopsy or not.

The only other change is that the pulmonologi​st has put Alex on medication for asthma. They are not sure if that is what is causing his oxygen saturation issue and coughing but it is a good bet. The two biggest risk factors for asthma are allergy issues and a mother with asthma so Alex has 2 strikes against him. Since his chest xray looks fine and he doesn't sound awful they don't have another explanation. I have asthma which only effects me when I am sick or exercising and we had already noted that he gets out of breath very quickly when exercising so this is a logical conclusion. Alex was a trooper as usual. Those who have been in a doctor or hospital setting with Alex know he is terrified of masks or anything on his face. His new medicine is an inhaler that he uses with a spacer that ends with a mask on his face. We knew he was going to have a hard time, but he did it!!! Now he just needs to get used to it because we are going to be doing this every day twice a day!

I believe that is all. Tomorrow will be quiet around here. Dr. Koenig is going to take the day off and just check Alex's labs from home.

I will let you know in the morning how our night goes.

We had our VERY FAVORITE nightime nurse last night. Alex slept from 5:00 yesterday until 7:30 this morning. I fell asleep around 9:00 and slept till 7:00. I still don't feel 100%, but mentally I feel much better.

As for Alex, he is still struggling. Our temp is still hanging in the 101- 102 range. He pancreas is still hanging in the 400's. We had to go up on his oxygen overnight. His oxygen sats dropped back to 93, which in a normal kid wouldn't be very worrisome, but Dr. Koenig does not like them that low.

Our two main areas of concern this morning. One he is spilling large amounts of protein in his urine. We are not sure if it is related to the flu or something mito related that is cropping up because he is sick. The biggest concern this morning is that his platelet count is extremely low. We have never seen this before. The fact that he is now transfusion dependent and he now has low platelets has Dr. Koenig calling in a hematologis​t to consult. One of the mitochondri​al syndromes she is considering affects your bone marrow and your pancreas. So she really wants that checked out.

I believe that is all for now. I will update later if anything changes.

I hope everyone has a sfae and Happy New Year!


Tuesday, December 30, 2008

We had a pretty decent day today. Alex's temperature has stayed between 101 and 102 all day. He was still pretty lethargic but his personality was back which was good to see. (Except when he was driving me crazy around 3:00 this afternoon).​
Dr. Koenig is still concerned about him. This is his sixth day with a fever. She doesn't like that even with the oxygen his sats are not close to 100. He is spilling protein in his urine and his pancreas numbers continue to go up instead of down. She feels like we will be here at least another 4-5 days.

He is coughing quite a bit so we are leaving him on his antibiotics for now and we did another chest xray this afternoon, but we don't have the results yet. We are still waiting on Dr. Pacheco to make the call on IVIG although Dr. Koenig would like it to be done.

I am feeling better then this morning. I just have a scratchy throat and am coughing a little. My hips hurt, but I don't feel as icky all over. Hopefully with a good night sleep I will feel better tomorrow.

I will update again in the morning.

The good, the bad, the ugly...

The good: Alex's temp is down to 100.6. Now we are praying it stays down. The oxygen is also helping keep his sats high enough.

The bad: I almost killed the nurse last night! Both yesterday and last night Alex's nurse were from a floor that typically deals with less sick kids. Dr. Koenig puts us in the IMU because the level of care is so much higher. Well that doesn't happen when they float nurses. So yesterday during the day we did okay except she questioned me about everything which just makes me annoyed. LAst night the girl was as sweet as could be, but she came in everytime and turned on the big overhead light and started talking to me and Alex. Anyone who has talked to me about night nurses in the hospital knows all I want is to be able to sleep so I was NOT happy.

The ugly: Alex has not had the energy/stre​ngth to even sit up in bed since Sunday afternoon. If he attempts to sit up (to take a sip of water) he shakes. At this point he is not even attempting anymore. He is talking a little more though since his temp came down.

Last thing...I am strating to fell really rundown/cra​ppy. I cannot afford to get sick. Please pray I do not get this nasty flu.

I will update after I see the doctors.


Monday, December 29, 2008

We are hanging in there. Alex's temp came down to 104. He was having a hard time keeping his O2 Saturations where Dr. Koenig would like them so she wants him on oxygen. The problem is that he will not let me anywhere near him with the nasal cannula. He refuses to put it on. For now we are making due with a tube blowing oxygen towards his face.

The plan is for us to stay until Alex is over the hump. We need him on the mend. He is way too sick to go home like this. Once he is better we will head home with plans to return the last week of January. When we come back Alex will go to surgery to have a J tube placed. This time they will place a separate tube directly into his intestines, so he will have 2 separate buttons. They will also perform a specialized test called an MRCP. It is similar to an MRI, but of the pancreas. Because of the length of the test he needs to be sedated. Dr. Koenig does not want him under anesthesia two times so we will do them together.

We are also running a number of genetic tests that could explain Alex's chronic pancreatiti​s. I am still awaiting word on whether or not we will do IVIG to try and boost his immune system right now.

Thanks for all the prayers.

Please say some extra prayers for Alex this morning. He has had a temp over 105 since last night and nothing is bringing it down. The poor baby is just miserable.

I'​ll let you know when I know something.


Sunday, December 28, 2008

For those who didn't see it, I updated earlier today so make sure you read that first!

Dr. Koenig and Dr. Pacheco were just here. They are happy with how good Alex looks, but they want to keep a close eye on him. As far as the flu goes, we don't have much cjoice. There is a medication, but it has to be used in the first 48 hours and it is only oral which means it is loaded with stuff Alex is allergic too. Also, complicatin​g the problem is the fact that we have no J tube and everything just sits in Alex's stomach and doesn't move. So we aren't going to treat as of right now. They are discussing whether IVIG would be beneficial fo Alex. We don't want to use it unless it is really necessary, so we are weighing the pros and cons.

Alex's urinalysis didn't look very good so we need to repeat that and make sure his kidneys are working okay.

For the time being we are going to continue on antibiotics because there is a bacterial infection that can go along with the flu and they want to be cautious.

We are also going to continue watching his pancreas. Dr. Koenig has not decided whther we will place a J tube while we are here (once he is better) or wait on his pancreas.

So a lot of waiting and watching over the next few days. Alex was thrilled to see Dr. Koenig. He kept wanting to hug her. I will keep you posted.

As always we appreciate all the prayers and support from you our extended family.

We are in Houston! It is scary to be So comfortable in a hospital, but we have been here so much it really is not the least bit intimidatin​g to be here.As sad as it is it has become our home away from home over the last 5 months.

We got here yesterday right around noon and were in the ER for 4 hours. They wanted labs done before we could come to our room. Poor baby had to be stuck, but luckily we got everything we needed from one stick. It took Forever! They knew if they drew blood the normal way they would blown the vein so once they were in they let the blood drip, drop by drop into the tubes...all SIX!!! Once they heard him cough they were worried about pneumonia, but a chest xray quickly ruled that out. Once we got up to the floor they TPA'd his port (clot busting meds) and 45 minutes later we had blood! I don't know who was more excited, me or buggy!!! We also transfused last night. Around 2 in the morning, they came in and told me that Alex's nasal swab for flu was positive for strain B, continuing our stellar history with the flu. Dr. Koenig also had him started on 2 heavy duty antibiotics until our blood cultures come back to rule out a line infection in his port.

Alex is doing pretty well. The fever stayed high until last night and has come down (once we got blood). I am not sure if it is gone for good or if it will rear its ugly head again. Poor baby had awful chills all day yesterday in the ER. I am tired there was no sleep to be had last night, but at least we are making progress. Oh, one last note. We will NOT be attempting feeds this trip. His pancreas enzymes are higher then they have been in weeks.

I'll update more once I see Dr. K.


Friday, December 26, 2008

Oh where to begin? As usual Alex has kept us on our toes!

Christ​mas Eve was really fun! We put out food for Rudolph, went to church and went out to dinner. Alex was so good through all of it. He loved smelling all of the different foods we had at the restaurant. Alex quickly fell asleep with dreams of Santa dancing through his little head.

Alex had been insisting for days that Santa was bringing him exactly 3 presents because that is what he had asked for! When he woke up yesterday, I informed him Santa had been here and there were DEFINITELY more then 3 presents. He came out of his room said "whoo" and promptly pretended to faint! Only my Alex!!! He had a ball opening all of his presents and loved everything.

His nose started running early yesterday, but we didn't think much of it. Then he started coughing a little, but again not too bad. Well by last night he started feeling pretty warm. I took his temperature and his fever was 103.4. I was hoping it would go down over night, but so far it is staying strong above 103. I have been in contact with Dr. Koenig. She would like me to come into the ER today. I am trying to hold off until tomorrow and spend one last day with Grandpa. Alex is his usual upbeat self. He is tiring out quickly but still playing. I am fairly confident we are just dealing with a cold, but we need to head to Houston anyway.

As always I will keep you all posted. I hope you all had a very blessed holiday.


Monday, December 22, 2008

What a day!!!!

Afte​r accessing Alex's port for the third time in three days and praying for such luck. And so the scrambling began. We wound up going to Dr. Benzick's and having our dear Judy draw blood. Unfortunate​ly after several sticks we only had 3 cc's of blood. We normally collect almost 8! So on a wing and a prayer we took the blood to the lab not sure if they could run everything or not. Luckily, they did everything! Our blood counts continue to drop so we will need a transfusion again next week. His liver enzymes are slightly elevated from the TPN, but nothing serious. And his pancreas labs are a little higher this week.

In other excitement...​When I went to give Alex his meds this morning his feeding tube was half in his belly, but the button that is normally flush to his skin was hanging by his knee!!! I knew that thing had been out of place! So i had to pull that the rest of the way out and replace it with a plain G button. It is really a blessing in disguise as his belly already feels better and his output is less already. Talk about a shock though!!

So needless to say between the transfusion​, port issues and J tube we will need to head back to Houston next week regardless of our readiness to feed.

Thank you for all of the prayers. May you all have a Very Merry Christmas!


Sunday, December 21, 2008

I write asking for a few very specific prayers...

1. Most importantly for Mommy to be able to draw back and get blood from Alex's port tomorrow. A few days ago we lost the ability to draw back. This has happened before, but changing the needle usually fixes it. I changed the needle tonight and I am not getting anything. Tomorrow is lab day and I can't get blood. We DO NOT want to have to go to Houston 3 days before Christmas.

2. For Bruce's car to do okay. Our Honda which has over 200,000 miles on it broke down on Thursday night. It seems okay right now, but we really can't afford a new car right now. We need this to hold out until we are in a better place financially.​
Otherwise we are having a great time with Grandpa. We have been to our Christmas party and finishes getting ready for Christmas.

H​appy Holidays!


Tuesday, December 16, 2008

We are having such a good time with Grandpa! It makes me so happy to see Alex excited to be with my Dad.

Alex's labs were okay this week. His liver enzymes are all slightly elevated so we will be anxious to get off TPN as soon as possible. His amylase and lipase (pancreatic enzymes) are still elevated, but not too bad. His blood counts are starting to drop again, but should hold out till after Christmas. Overall, not bad!

Tomorro​w, is our playgroup Christmas party and Friday we will go to the Children's theater to see a Christmas show. Otherwise, we are just relaxing and enjoying time at home.


Saturday, December 13, 2008

I have an update, some blessings to report and some prayers to ask for!

Our update: Alex is happy to be home. He is playiong and feeling pretty good. We haven't had any complaints of stomach pain. He continues to put out large amounts of bile each day, but as long as he is not hurting I am okay with replacing fluids. Since being on TPN for the last few months, Alex has gained almost 3 pounds and grown an inch. We are so happy to see him finally growing. We are trying to get as much weight on him now because we know he will struggle when we go back to feeds. We run labs on Monday and will see how his pancreas and blood counts look, but for now all seems well.

Blessi​ngs: First and foremost...​Grandpa is coming tomorrow! We are so excited. Grandpa was supposed to spend Thanksgivin​g with us but because we were in the hospital leading up to the holiday he decided to wait for Christmas. I need to thank my Sister, jenn for loving us enough to always be flexible with holidays. Dad always spends Thanksgivin​g with one of us and Christmas with one of us. Well for the second year Jenn and her family have graciously changed plans to accomadate Alex's schedule. Jenn we love you and appreciate that you always do what you can to make things easier on us.

The next blessing I can't even believe! Our church contacted us and said they wanted to help us out between Bruce's job situation last month and Alex. They let me know that they had something for me to pick up. Well, I went to church yesterday and they had several frozen meals, $225 in grocery store gift cards, $150 in Target/Walm​art gift cards, and a free meal at a local restaurant. I am so touched and blown away by people's generosity. It really does mean a lot.

Prayers​: We have several friends who are in need of prayers right now.

1. Lauren is a little girl who is getting ready to be admitted to the hospital (in Philly) awatiing a heart transplant. She is a precious little miracle and while her parents knew there was the possibility she would one day need a heart they were hoping it wouldn't be this soon!

2. Landon: Landon, Jen and the whole family are getting ready to leave to go "home" to Missouri to spend Christmas with their extended family. Please pray for Landon's health to hold out so that they can enjoy this much needed time at home.

3. Smauel is our new buddy at the hospital. We have "talked" online for a few months, but they spent 3 weeks inpatient with us in Novemebr and were back with us again this week. Samuel is very sick with 2 kinds of central line infections and the stomach bug that Alex had in November. They are going into surgery later today to remove his port. He will need more surgery next week to replace his port with a new one. Missy- I pray you guys are home for Christmas!

4. Tricia and Andrew: Please pray for there muscle biopsy results to come back. They have been patiently waiting for 12 weeks.

5.My close friend Mariah and her family as her Dad was just diagnosed with inoperable lung cancer.

6. Countless other families I can't name who are struggling with mito.


Thursday, December 11, 2008

We are home! Alex is holding his own....More tomorrow!


Wednesday, December 10, 2008

We are coming home!!!! In Alex's words...WOO​HOO! They think they are going to discharge us tomorrow. They feel pretty strongly this is just the motility problem. They don't feel it is necessary to put him through any more testing right now. The plan is for us to come home and closely monitor his ins and outs. Basically we will measure Alex's pee and what he puts out his G tube. If that is more then what he takes in then we will replace it with fluids at home.

We are still waiting on GI to okay this plan. We are so happy to be heading home in time to see Grandpa and enjoy Christmas. We will be coming back to the hospital on December 29th for "at least" a few weeks.

Thank​s for all the prayers.


Tuesday, December 9, 2008

Things are trekking along here! We saw GI this afternoon. They feel like Alex's bile output and stomach pain are all symptoms of his slow motility/ps​eudo-obstru​ction. GI feels this is a problem we will deal with on and off forever. He wants to have a plan for us to be able to replace fluids at home when this happens so we don't have to be admitted.

Wi​th that being said...They are going to watch Alex for the next few days. If his output slows down great. If not they want to run a few tests to check for obstruction​s.

So we wait and watch.


Monday, December 8, 2008

We are back in Houston! Alex's stomach problems escalated over the weekend. He was getting dehydrated and Dr. Koenig was concerned. Now we have to figure out why we are having so much trouble. We are praying for a short stay and a return home quickly.

I will update tomorrow when i know something.


Sunday, December 7, 2008

We are enjoying life at home! Poor Alex continues to struggle. he is having a really hard time with his stomach. It is dishearteni​ng because normally if we don't feed he feels great. Right now he is putting out huge amounts of bile and gas and crying about his belly hurting numerous times a day. We don't really have an explanation for this.

I am anxious to see what his bloodwork shows tomorrow.


Thursday, December 4, 2008

We are home! Luckily Dr. K kept her promise and didn't try to keep us. We walked in the door at 4:30.

The good: The transfusion did its job and brought his blood levels up. He didn't have a reaction. His pancreatic enzymes are improving.

T​he bad: Alex's blood sugars continue to be a problem. We are seeing higher highs (240) then we have ever seen and very low lows (30's). Dr. Koenig is very concerned that he may be developing diabetes. For now we are just going to check blood sugars 4 times a day and keep an eye on things. Luckily Buggy doesn't mind finger sticks.

Than​ks for all the well wishes and prayers.

Last night was rough! We got NO sleep. The nurses and tech came in at 11, 12, 2, 3 ,4 and 6. The good news is Alex's blood counts came up nicely. We are waiting on Dr. Koenig to give us the go ahead to go home and our team to write discharge orders.

More later...


Wednesday, December 3, 2008

This has been a long day and it is far from over! Alex and I left the house at 6:45 this morning. The plan was to get here early get our blood and be able to head back first thing tomorrow. Well we arrived at the hospital at 11:15 to learn that there were no available beds on the floor of the hospital where we needed to come. After sitting in the waiting room for 2 hours, we convinced them to lt us hang out in jen and Landon's room. Good thing because it was another 5 hours before we got a room. The room only had a crib in it and it was another 2 hours before we got a bed.

It is now 11:00 and we are just getting ready to start his transfusion which will last 4 hours! I have to stay awake at least for the first little while to make sure he doesn't have a reaction. As most of you know this is WAY past my bedtime. Also, they are worried about his blood sugars so they are checking them every 2 hours all night long. So needless to say I will be exhausted by the time we get home!

I will update tomorrow and let everyone know how it goes.


Tuesday, December 2, 2008

Well we are heading back to Houston tomorrow. They promise me it is only for 1 day! We will leave bright and early tomorrow morning and be admitted for Alex's blood transfusion. We should be able to come home sometime on Thursday.

Please pray for safe travels for us and a reaction free transfusion

Monday, December 1, 2008

AHHHHHH!!!! Can everyone hear that scream. We just checked Alex's labs for the first time since being home. He needs a blood transfusion which most likely means another trip to Houston.

Alex has also been suffering from stomach pain, but we are trying to control it at home. It has not gotten bad enough to need narcotics which would also mean going back. His pancreas enzymes were a little lower today.

I will update tomorrow and let everyone know what Dr. Koenig says. Please pray for my sanity!