Saturday, January 29, 2011

Day after surgery

We found out that his ultrasound was good. He didnt have any clots. They tried to do labs today and at first they were unsuccessful. The cardiologist came in and did his echo. The cardiologist told us that he found a decent size clot. The doctors talked it over and they are gonna start the anticolagant twice a day to hopefully keep more clots from forming and getting bigger. They have to take labs everyday. Humph they are concerned with the veins collapsing and not being able to use them. The thing is they dont have enough veins to keep taking blood. They are talking about putting a pic line in they want to wait however we feel that they may have to consider this earlier than they want. He will have to be on the antcolagant for 3 months and the antibiotics for 2 to 4 weeks. Due to the cultures coming back positive. thanks to all. Will update when we know more.
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This ones for the boys. Our boys love helicopters.
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Friday, January 28, 2011

Surgery day update

Today eli had his surgery. Heather and i came up about 730 this morning. We talked to the docs as we do every morning. Explained what was gonna happen and said that there was as always no guarentees on the time. The infectious disease doc came in and told us that it would be most likely 2 weeks more after today. This was to allow the antibiotics to do there job and that they dont send it home with families. We also won't know about the anticolagent for his clots until we know if they were taken out during surgery. Eli also has to have 2 negative blood cultures which can take up to 6 days to get the results back before we know what else we need to do.
At 120 we went to the recovery room and met with the surgeon really nice guy and the anestiaologist. We really liked her she understood mito and was 100% willing to follow the protocal. It took about 45 minutes then he went back. The surgeon came out and explained that the port came out easy. He was unsure of the clot if it came out or not so he sent it out to be tested. He also took blood cultures and took some cultures from inside of eli where the port was to check on infection.
About an hour later i went up and had them call back to see how he was doing. They said he had a fever and that his o2 stats were not where they would like them to be. So they put him on a 1/4 l/hr and tylenol and fever broke quick and o2 levels came back to normal. When he came out he was wide awake. It was amazing he has never been that way after surgery. He usually is sleeping and very hard to keep stats at a decent level.
We went upstairs back to the peds floor which another thing that never happends always in the picu for atleast 24hrs. When we got to the room he wanted mama and he played abit and hung out with us he did very well. I must say i'm very happy that they followed the mito protocol that they followed i really believe that made the difference.
He is now sleeping he is beat. Too bad he has his ultrasound tonight at nine to see about anymore clots. Crossing fingers that all will be show none. Positive thoughts. I'm sure he will go back to sleep. Will update more when we can. Good night all and thank you for all the positve thoughts and prayers and help that we have recieve.
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Surgery day

Today is surgery for my tiny man. He is getting his port out. Surgery is usually a struggle for him. They are going to try some new protocal for anestia for him per Mitochondrial diesease. We are hoping that all the measures that they are taking with be a speedier recovery than the others. Will update more when we have some. I would like to thank all of you for your prayers, postive thoughts and many posts. I would also like to thank everyone that has got us care packages. It has helped alot to have such great people in our lives.
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Wednesday, January 26, 2011

kc day 4

After doing some test they found that Eli has a blood clot on his port. They have also informed us that he has a full blood infection due to our last hospital stay. When eli was went to wesley in wichita they didnt check for any of these things. All they said was that he had an infection. If they would of checked is blood they may of found the infection of the blood and some of this may have been avoided.We talked to the hemotolgist and infectionous disease doctors and they say they say that there are two options on the clot and infection. One we maybe able to treat with antibiotics and blood thinners inorder to save the port. However if the antibiotics dont work then the port will have to be taken out. The main doctor on the PICU has made it clear however that if we need to do surgery then he wants the infection under control because they will have to put in an IV however this may spread the infection.If they cant get the infection to stop then they will have to due surgery. So it's very complicated.

 We were told during the night last night that his port has stopped working and they may have to take it out.Eli's heartrate and respiration has been high since he has been here. He also had a fever. This morning we will be talking to the doctors on options on the possible removal of the port.

I just want to say thank you for all the support we have been given. All the prayers and postive thoughts. All the helpful suggetions. And the food and the snacks that have been brought up. It is so humbling to have such great people to give that type of support. Especially when we dont fell the hospital is really giving any of that.

I will try to post later when we know more. We are still kinda in communication limbo with very little ways to communicate.

Tuesday, January 25, 2011


Sorry for the minimum communication phones don't work well, no labtop, and can't really use the hospital phone for long distance without approval everytime.

I will try to update later when computer becomes available.

Thanks to all of your prayers and postive thoughts


Thursday we were discharged. We were not able to bring home any additional fluids. He was so sensory overloaded during the leave of the hospital. We were going to the car and something fell off the cart and he just cried. Heather and I tried to comfort him with very little success. We got home and saw the family. We then layed him down in his bed and all he would do is cry. I felt so bad for him I went into his room and talked to him. Heather went in and held him. Nothing seem to work. He finally fell asleep about 9:00pm

Friday... Our little man woke up and then fell back to sleep for 4 hrs it was not like him. We figured we would let him sleep.Since we thought that it was his way getting back to norm. He then got up and played all day. He was doing pretty well. He got a low grade fever and we put him to bed and he seemed to be doing pretty well.

Saturday... Eli seemed to be not himself. He was more tired than the day before and kept having a low grade fever thru out the day. Heather and I thought it was ok to go out since he didn't have any fever for awhile before we left. We went out to dinner and we just hung out it was nice. All thanks to our friends for the gift card. We got home and his heart rate had been up for awhile and he had a fever. It looked like the tylenol and ibuprofen  wasn't working. Paula his nurse called the on call and he suggested with his heart rate that he go to the ER. Heather and Paula took him to the ER and the doctors seemed to be really good. They said that it was an infection and that it was safe for him to go to his appointment in KC.

Sunday...Heather and Paula came up to kanasa city. He was having some troubles keeping his stats up so they put him on oxygen when they were in the car. Otherwise he seemed pretty good. They checked into Ronald Mcdonald House. Really nice can't say anything bad about them. About 5pm is when all hell broke loose. Eli's oxygen went down into the 70's. he was retching and shaking. Things got worse. They had to call 911. In about 10 minutes they had a room full of people. I got a call and less than 45 minutes I was out the door. It was one of the longest drives I could ever made. My phone was nearly dead. Every so often some song would make me tear up. It's was very emotional. I got to the hospital in the best time ever. I saw heather,eli,paula, and a friend of the family. They were still in the er. He reached out for me. I almost cried. It's crazy how emotions run like a roller coaster.

Tuesday, January 18, 2011

Our wedding

Yesterday was very busy. We got up and hung out for a bit. Watched a little bit of netflix. Then i went home for a bit got some laundry done. Went to the store got a cd for our wedding. Then back up to the hospital. Heather and i went and got balloons. We placed them at the front desk and at the holt conference room. The caterers were awesome. They made a cake for us, three tier. They decorated the room. Gave us punch,mints,and nuts. They donated it all. I was very surprised. One of our friends took pictures for us. One of our friends got us flowers. Heather had so much help getting her hair and makeup done. We also got a dress donated. So in 72hrs of planning and alot of fantastic friends. We were able to pull off a fantastic wedding. It was very fun and heather.

WOW she looked fantastic. I didn't get to see her until the wedding which is what i wanted. They did pictures of me and the girls and pictures of heather and the boys they walked us down. When it was ready i walked in first(the night before i bought some red lightning mc queen glasses) so i put on my glasses and walked into holt. Everyone looked towards me and laughed it was nice and it helped me relax abit. I got up to the front and waited with my witness mike. He is one of our good friends.

Then the music came on and saw heather coming thru the door. I didn't even realize the music was on. She was so beautiful in her dress. She walked down the aisle i couldn't take my eyes off of her. She was so beautiful in her dress. She was sparkling from head to toe; come to find out her haha was her sparkling flip flop which are so her. She also had on some beautiful jewelry. Diamond earrings that made her ears pop. A beautiful necklace that made her neck shine. She also had a fantastic bracelet that helped tie all the jewelery together. She has great taste. She made her way down to where i was standing we met eye to eye. Char mikes fiance was heathers witness. She stood behind heather.

The chaplain started with the introductions. Heather and i said i do. We then stated our vows, that we both wrote. I was very happy. The chaplain then read a poem that heather had picked out the night before, it was a total surprise to me. It was a very beautiful and fitting for the occasion. We then were announced as mr and mrs tomkins. We then walked back down the aisle and bubbles were blown.

We talked to people for a bit got lots of pictures. We cut the cake and feed each other. We both were very very nice to each other no smashing into faces. Our friend chelle took a bunch more pictures. Eli was able to come down the doctors let him he need to wear his TB mask. He was in the front row with his nurse. He was super fussy i tried to calm him multiple times. It was all just too much for him. Once the ceremony start he calmed down. However he got pretty fussy once pictures were started.he went back to the room and took a nap. Afterwards heather and i got all the things back to our room and went out to eat. We were totally exhausted.

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Eli updates

The last three days have been un believable. Saturday was probably the most mellow of the three days. We talked to the doc. It was a better conversation however still not really listening to what we were saying. So we figured we would wait until sunday and talk to the next hospitalist. Well he came to the room while we were getting ready for our wedding. They seem to run very late on the weekend. Saturday she wasn't here until like 6pm pretty nerve racking when u want answers that no one seems to have. We talked to him real briefly due to we were super busy. He stated eli couldn't go down without his TB mask which we were told the day before that we could go with a basic mask. Then monday came. Hmm lets just say monday was bad. Very bad. We asked the nurse for like the 10 th time in 3 days about the meeting and she said it was 2pm and that's what she was sure of since friday. Would of been nice to know cause i could of worked a few hours. I just didn't want heather to go into this meeting without me. So we tried to just relax before it wasn't easy to do. Then it came. We walked in and saw 9 people other than us. Mind u we were told it would be us the dietician and the doctor. Hmm so wasn't that. Then the meeting started it went ok for a bit seemed like we were getting somewhere. Then out of no where a social worker jump in and well lets just say it went all down hill from there. It was no longer a semi peaceful meeting. We were there for like 3hrs. We left just frustrated and angrier than we were before the meeting. People stopped listening. So we left. We were not going to be told that time was what the issue was and we weren't listening. Our issue was communication. We weren't getting our questions answered we were told no no and this is how it is. Very frustrating. We were told if we signed out AMA that our insurance wouldn't cover our stay and that SRS would be called. What a bunch of crock. We just want whats best for eli and it feels like we are all not on the same page. My son will die one day all we want is quality of life to be the best we can get. There were like two days that he looked and acted the best we have ever seen. We want that. That's it. The docs are now doing a 24 fecal testing to check on absorption and checking ph balance on his g output. They also increased his fluids. Unknown if this will do anything. I wish this would of been done a week ago maybe we could of been home by now. Especially when we mentioned that absorption could of been an issue. We have taking about this since last monday. Humph.
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Thursday, January 13, 2011

The last three days

It's been along 3 days. We have come to the realization that we have to go with a moto "live each day to the fullest" So that is what we are doing. We are letting eli live his life to the fullest as much as we can. By letting him go out and enjoy the world. Protecting him as much as we can however letting him enjoy life. We also have put that moto into our lives. Heather and I have decided to get married this Sunday. Right here at the hospital. We love each other so much. We were going to do it in the summer fall time. however with eli and all of his medical conditions and after having multiple "talks" with his doctors we have decided that we are going to do it early. We want all of our kids to be with us on this special day.We are living each day to the fullest.

Tuesday was very hard.Eli was super fussy all day. Nothing made him happy. Heather tried everything  Eli's nuero came by late Tuesday night. We talked for quite of bit of time and we discussed the possibility of MITO. He seemed to be pretty sure that's what is was.He ordered some blood test to due a preliminary for MITO it will take about 2 to 3 days to get the test back. He was going to do a physical however Eli was sleeping. He was very informative. He was very confident in what he had to say. He made us very comfortable. His nuero says after the blood work if it comes back positive then a muscle biopsy. We would have to go to Atlanta for it.

Wednesday was a very busy day for Eli, He had many visitors.A family friend came up and gave him a really cool cube. Eli loves it we roll it too each other and he laughs like crazy. It's so cute. Also his case worker came up for a bit to look at his chart and get some updates. His home health nurse Paula came up to hang out with him. He loves his paula.The neurologist came back and did a full physical on Eli. We also asked some more questions about the test he says if it comes back not being MITO then we need to do a spinal tap to check for some nuero transmitter type of disease. Sorry i can't remember what it is called. He also had one of mommies friends come up and give him some clothes and blankets. He so loves the warmth of the clothes and we love them it makes it harder for him to get at his tubes. We also had a new friend come up. She brought up some toys and books. We talked to her for a long time. It was nice to have company. Heather got to go home to see the 4 older kids. They sent me a video telling me that they missed and loved me. It almost made me cry. I miss them very much.I miss home. I miss what we would call normalcy.

Thursday... hmm well Thursday has been very interesting. The doctor came in and said that she wanted to turn off his TPN and his IV fluids.Hmmm we said that makes no since to cut over fifty percent of his fluids when he is still dehydrated. We went back and forth with her she then said we will just start with the TPN slowly. We were not super thrilled with that option. She left the room. PT came for Eli today and she played with the blocks that our new friend brought up. She says that he looks great and is doing very well. Some positive to the day. The only thing is that the reason for him doing so well is that he is well hydrated. He is drooling for the first time ever. His lips aren't as dry as they used to be, We see tears when he cries. This is with almost double the amount of fluids at home. Which so far we can't figure out how to do it at home without TPN and IV. We then talked to the nurse about the frustrations we had and she said that she would talk to the doctor and get a dietitian to come up and see him. Heather and I were both not jumping for joy. Due to the fact that all they seem to be doing is using a text book guide on how to help a child who is sick and they are trying to do it all by the numbers. The problem is Eli didn't read that book when he was born so he doesn't really follow the text books.HEHEHE. The nurse came in and said we are going to keep everything the same except up his feeds a bit and reduce his TPN. We said ok. The dietitian came in she was real nice. She started out with the numbers game just as we thought.However she listen to us and realized Eli is not a normal child and he doesn't fit that chapter of that book either. She explained to us that it made since to have eli go home with the TPN and the IV to help with the dehydration and slowly increase his feeds to where he could slow get off both. She said that she would talk to the doctor and put it into his file. She said she didn't know if it would help or not however she would do her best to help us. I believe she will. The doctor probably isn't overly thrilled with us but i don't care. Our nurse,dietitian,and his pediatrician all support what we want to do. We will just see how tomorrow will go. i will do my best to keep it updated so it's not so long next time

Tuesday, January 11, 2011

working today

Wow so many feelings running through my head. Compassion frustration sadness, anger happiness. I know these are crazy to have so many feelings all at once not sure which one is the dominate one. Heather is waiting on the doctor to come. Her rounds are much later than yesturday. She is also waiting on the nuerologist. Someone has to do something. This GI thing needs to be fixed.Someone has to know something. So far everyone is at a wait and see. Heather and I are lets fix whats going on. Unfortunatly all I want to do is tell them what they are going to do. That usually gets me into lots of  trouble. I have a problem with just asking them to do something with just a little push. Hopeing it doesn't come to that. I will be making alot of people very unhappy with me. I know heather will talk to his doc and I hope the doc truely listens to what we are asking for. It's really not much just to do as she said she would in a reasonable time frame.It's been over a week to me this is long enough to wait the reasonable time frame has past. Missing my family. Got to go back to work.

Sunday, January 9, 2011

Update of the day

I returned to work today. It was kinda hard. I really didn't like leaving eli and heather however sometimes you have to make sacrifices to get what you ultimatly want in life. So i left and went to work.

It seems like eli is doing well on the study. One of my concerns is he is still having lots of diapers. He is also needing alot more fluids to make up what he is loosing. Today it was three times more. He is now up to 4ml/hr and at midnight he will go to 6m/hr. He will continue to go up by 2ml every 8hrs for atleast 24hrs. The doc came in this morning and she will be getting a hold of some gi doctors. So we can gain back a specialist that we really need to have. Tomorrow we visit with the nuerologist he is new to eli.

Today we also had the kids come up it was really nice to see them. They were very happy to see us and eli. They all seem to be doing very well with heathers parents. Thanks to heathers parents. I also would like to say thank you to our friend laura and her family for bringing us up some very fantastic food and dessert and some company.

. One thing i would like to say heather really summed up the way i feel on the last paragraph of her most recent post. I couldn't of said it any better. Thanks babe for being honest,truthful,respectful, and communicating your feelings. i will post more later

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Saturday, January 8, 2011

Update for the day

Well today went better than expected on the trial. So far he hasn't had alot of diahrea or discomfort. Starting tomorrow they will be uping his elecare and decreasing his pedilyte by 2ml every 8hrs. Doc says if he does well with that she will increase alittle more.

eli played on the floor today for abit working on some skills. He got pretty tired pretty quick. So we didnt do much. We are just trying not to loose anything more.

we also talked to the doc today. Boy sometimes the four pillars of our life just suck. However without them though we would have the great team we have in place. We wouldn't feel comfortable with the people taking care of eli. It's very important to me to have it that way. However doesn't always make me happy when i hear that way. Kind of a reality check.

So far we stay put and see how these trials pan out. On monday we will start to consult with GI doc since ours decided to fire us without warning or notifacation. Still re bothers me that she did that.however what can you do. If she cant help eli and follow our life moto then we don't want to have her.

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Friday, January 7, 2011

Today and all its ups and downs

Today has been one of the harder days. Why you ask well we as parents need to make some decisons that ultimatly could help or hurt eli. His hospital doc came in and we talked about our options. She wants to start him back on pedilyte and elecare tomorrow. Everytime eli gets anything goes into his j he gets very soar. She thinks that if we give him a trial run(which we did a couple of days ago and didn't do well) for 24hrs it may kinda reset his bowels. We are not totally sold on this idea. We have seen him in so much pain and discomfort we don't want to see more. However if it works we won't have to go home tpn or have to be transfered out. But if it doesn't work she wants to try a formula called neocare. Which takes up to 10 days to get and we have no clue if it will work. And even if we were to get transfered 3 or so hours away no guarentee they will be able to help either. Our delima is should we let them do it even for 6 or 8 hrs to see what happends or just say no. Then we have then what.

We say the flurosopic team really nice guy we have used him before. He changed the gj tube, checked for spasms,which he didn't see any he also made sure that everything he could see he looked at and said it was fine. He did however find that the balloon wasn't fitting close to his stomach. He says that was the reason for the leakage. He just couldn't say for sure why eli was uncomfortable when somethings are put into the j. He thinks that maybe spasms. After we started to leave and eli started to be in alot of pain. Humph no way to fix it. He then had diareha all day.

I feel helpless. As a man i have no control over what is happening to my little man. I cant help him feel better. Its so hard to make the right descion not knowing if it will hurt him and make him worse. I feel terrible cause i am having such a hard time trying to help make a decison with heather. I kinda feel like im letting eli and heather down. It really sucks. I'm supposed to be the strong one. Heather hasn't said anything about me not being there or not being strong or anything negative like that to me it's just the way i feel as a husband and father. I hope it gets easier however i'm afraid it won't.

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Update from yesturday

Yesturday was very rough. Eli had issues with tpn. His mag and sugar levels didnt stay were they needed to be. Doc came in and we talked.his doc is super cool. She meets all of my pillars in life. Sometimes i dont like what she says but sometimes you have to say what you have to say. She said that we would start at 2ml of formula and 8ml of pedilyte. We got transfered to PED floor.

Once up here we got back to our room. Unfortunatly we got a nurse who was hmm how can i put this.... less than desireable. We wanted to change however we figured we can wait a few hours to get a new one. We fought with her and well i was less than nice to her after hours of the crap. Mainly it was over his feeds. Everyone wanted him to be on 35ml/hr for fluids. We were not overly thrilled with that because she was "just following orders". We questioned her multiple times and told her that she wasnt going to increase the j tube because he cant handle it and put tpn at 25 he couldn't handle 9.78. She really angered us. She called the doc on call and the doc agreed. However she still wasn't listening. We finally just said we aren't doing it and we will wait for one of our favorite nurses. The nurse wasn't thrilled. She was even talking about us at the nurses station.

The night nurse is awesome we have had since eli was a few days old. She listened to me and did everything that needed to be done. Eli is now on the 30 of tpn and 5 of pedilyte and handeling it very well. Swelling is down. So the night went pretty well

We got our first room back late last night. A very sentimental room. Waiting for doc to come in. We have to talk to her about replaceing the gj and we need a new gi do. We were fired without being told. Word has it eli is too complicated and the gi doc doesnt know what to do. Humph busy day ahead of us it appears. Will update when i can.

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Thursday, January 6, 2011

Good morning

Well last night they tried to do tpn and they stopped it very quickly. The intensivist stopped it because elis blood sugar and magnesium was much lower than he would like. He put him on iv fluids to try to bring them up. So far his blood sugar is coming up he is at 65 and they want to be between 70 and 100. So we will see. He was in alot of discomfort they gave him tylenol at 430 then tegerdal and it seemed to make a differnce. Blood culture so far is good at the 12hr point wont be completly done until the 48hr point. We are currently waiting for the docs to come in. Will update thru out the day.
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Wednesday, January 5, 2011

630 update

Wow what a day. Eli is now in the PICU not sure how long we will be here. Eli's surgery hmm was interesting. Eli went in about 145pm he first got anestia and he woke up. Then they had to give him more. That's unusual for eli. They started the BEAR testing. The test results were not overly suprising however there was somethings that was not expected. He has one ear that is mild to moderate. The other ear is moderate. The audiologist said that it wasn't from the antibiotics. Which is not good. It just means that it is degenerate. It will most likely get worse. In about two weeks we will retest and start fitting for hearing aids.

Then she did the port. It was much easier than she expected. However it was put in then she found that it wasn't working. She had to re cut him open and re adjust it. Now it's working well so far.

She then did an EDG. it's a scope that traveled down thru the month all the way down into his intestine. She said that everything looks good. She isn't sure what is going on with him. She is gonna try to think about it and see if she has anyother idea It could be. She also advised sendin his info for a gi consult to see if they maybe able to give some suggestion on where to go next. We also are gonna ask for a nuero consult.

Eli is now just resting. He has got his iv out and they have started his tpn. Hoping we will go back to the peds ward tomorrow. will give updates as I have them.

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Update on eli 210

Eli finally went into surgery at about 130. She was running late. We talked to her about all of our concerns with the g and j tube. She is gonna go ahead and do a scope thru his mouth to see if she can see anything out of the ordinary. She will also be checking on his undisended testicles that she worked on a few months ago. She said it probably will take longer than she would like to put in the port. Just because its eli and he likes to keep things interesting. They will also be doing the BEAR in the or which is really nice so we will have hopefully some answers. More updates to come.positve thoughts for mr eli.
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Brief update from the night

Heather said he had breathing treatments and cpt every 4hrs thru out the night. At the 2am time they had to stop cpt due to a massive caughing fit. No fever which is awesome. Since i've been here very little fussing. They are gonna take us down to surgery about 1100am. So far we haven't seen either doc yet. His hospital doc is making rounds so we should be seeing her shortly. His surgeon probably not untill we go down for surgery. Will update when i know more.
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Tuesday, January 4, 2011

9:30 update

It's been a long day. 5hrs in the radiology department. What we found out is what it isn't. It isn't psudeo obstruction and it isn't something major with his valve . What we do know is he is in alot of pain when we put anything in his Jejunal and also that his G is leaking very bad out of the stoma. His hospital doc came in and we tallked for awhile. She says that she will not send him home with TPN right now. Since we don't know what's going on in the other areas. We will be in the PICU for atleast a day. Surgery is tomorrow. He will be getting a Port. This will make things easier for him to get blood work done and give him food. We will be meeting with the surgeon in the morning. Eli also has pneumonia again. It looks like he is coughing up puss. All we can do now is take it day by day. Doesn't mean I'm not worried or stressed however just have to try to do the parent thing and stay positve for whole family. Will update when i can. Night everybody.

Update 530pm

Humph today has been along day so far. With very few answers. We found out with our first time in radiology we found out that there is no obstruction. Which is good and bad all in one shot. Eli had i think about 30 cc of barium in his j tube. He cried and cried my tiny man was very uncomfortable. We had to get his nurse to come down and give him motrin. The tech wasnt very nice he disagreed with the orders. He also wouldnt change his gj tube. And we also almost didnt get his polick valve test. Heather told him that was not gonna happen.

About 20 minutes later we were back down to radiology for a gastric empting. Holy cow much better experience. The test showed that everything looked fine. The problem is when they put the radioactive material in it leak all over the place. So someone saw it other than us first hand.

We are back to square one though. No one has any ideas eli is in a whole lot of pain when anything goes into his j and it leaks out of his g. He also coughed up some of the bile. Which he isnt supposed to be able to do. We are watching him very closely to make sure he isnt going to asperate on stomach acid.

We also missed his surgeon which we have been waiting for since yesturday. She was supposed to be here this morning and never showed. Then she comes when we are in radiology for almost 5hrs. No one told us she was here until we came back. Surgery is supposed to be tomorrow which she will do the port and the the bear testing for hearing.

Now just waiting for his hospital doc to see what's next. she has to give us some path to go some ideas to try. my little man can't keep living this way.

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11am update

Well eli is headed for surgery. He will be getting a port. It will help him when he needs an iv and getting blood work. Also he will be getting a new gj today. His has some black remits that no one seems to know what it is. Also he is leaking out of his stoma still. We are changing it alot. He will also be doing the bear hearing screening to find out how much hearing we have. His blood work came back hemolized no suprise and they also didn't get enough so his doc is putting it on stand b. They finally got a urine sample so we are waiting for those results to come back. The other test still say he is dehydrated. They also are checking his piloric valve they suspect that it could be block. They also think that he could have a puesdo obstruction. If not the other things are bad enough.

I'm always concerned when eli goes for any surgery. He has had multiple issues with anestia. He had to be intibated and it was very scary. It's definitley something that I don't wish this experience on anyone. Emotions are crazy at this point.

I will be as strong as I can because that's what parents do. That's what spouses do for each other. they do everything they can to keep the stress level down. Eli is a very determined little man. He will do well that is my montra. We will do fine. We have friends and family that care about us. more updates when we have them.

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7:00am update

Eli did pee this morning so no cath yet. They are doing a UA to see of any infection. Bile leakage seems to have decreased. He is coughing again. Heartrate hasnt changed much. It is still high for him. Dr Mo his cardiologist came very early. It was suprising. I explained as much as I could and Heather talked to him as she was driving in. The one thing that just pisses me off is when he was called he was only told that we were here. He wasnt told about the elevated heartrate which DUH is the reason to call a Pedatric Heart Specialist. He is ordering a EKG for eli and says he will be around so he will have them fax over the info as soon as they get it so he can make a decision if he needs to do more testing. Waiting for Dr Molik on for the surgery side of things. We will just have to play the waiting game again. Will update as the day goes.

Monday, January 3, 2011

Update 905pm

Dr molik his surgeon will be here in the morning to consult on whether or not eli will get a port and on the excessive drainage out of his stoma. Humph we were told she would be up tonight. Also his cardiologist will be here in the morning. Heather has gone home to hopefully get some sleep since she has only slept for about 4hrs in the last 73hrs. Eli has peed alittle hopefully enough not to have a cath in the morning. We will just have to see. Eli is also finally sleeping in his bed. This is very good. Well im off to bed. I will post again tomorrow with more updates.
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Quick update

My little tiny man has gotten worse high fever iv in the head and cath. The night was very bad ran multiple test. No one knows whats going on. I super concerned. Heather is doing ok as ok as anyone can be. The resident is terrible. Now just waiting for the doc.

update 1220pm Resident came back in and apolgized to heather about not really listening. it seems like he probably talked to the people on the floor and they advised him about what type of people we are and how much information he can get from parents if he just listens.

Dr heflin came and talked. it sounds like they may do surgery to put in a port for drawing blood and giving fluids. heck we have been asking for that for along time. She also said that they would try to do the hearing test and the cpap at the sametime so we wouldn't have put him thru anything else.No suprise she is calling the surgeon,pulmologist and possible the urologist. eli's body isn't relieving any urine on its own or any bowel movement. Hopefully that will change soon.

So now we are waiting to find out what the surgeon wants to do. They tried to get blood which heather and I were pretty sure that they wouldn't and they couldn't so now we wait until 4 for vitals. Temp is down a bit but heather said that it's been going up and down. It's very frustrating that no ones anything. It just angers me and I'm trying to not to show it or express it cause as a man you are supposed to the calm one. I can tell you it's not easy. More updates when I get them.

update 250pm
Dr molik eli's surgeon will be around soon. eli stoma the hole that the gj is in has been leaking very badly for the last 24hrs. she will be around soon we hope to let us know what her thoughts are and what is the next step. she will tell us if we will have surgery.

update 515pm
Eli is not peeing at all the last 3hrs. We noticed that his cath fell out. his 2 by 2's are soaked in bile. He is very uncomfortable. all day he has been very clingy and he hasn't let heather set him down all day. Everytime he gets moved he cries. He is so miserable. Still waiting on the surgeon humph this waiting game sucks. They were gonna try some elecare and we said no and after the nurse looked over him she called the doc. The doc said that we will wait and see. If he doesn't pee by 8am tomorrow they will put the cath back in. his body isn't moving anything out. It really sucks I really wish I could help my little man. I really hope that heather gets some sleep but I don't know hope mr e will give her a break.

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Sunday, January 2, 2011


Eli has been pretty sick over the last few days. He has gotten worse. He was very lathagic yesturday and after heather and i talked we called his doc. After talking to the doc she said for us to keep an eye on him and if anything change to let her know. She also said she wanted labs done. So we called around and found someone that could do it however it was going to cost . We called dr h his doctor and she said to keep an eye on him overnight.

The night was rough. Started basically at about 6pm. He was very sleepy and didnt want to do anything. We put him to bed about 8. About 1230am he woke up crying. I got up checked on him got him somemore food, changed his diaper twice. Those were pretty bad. He seems not to be able to keep it down. He was pretty uncomfortable and not very happy. We gave him ibuprofren, changed his diapers multiple times applied A and D fantastic stuff however nothing seemed to help.

Heather was awake and we talked trying to figure out what we could do. At about 330 heather went into his room and we made a bed on the floor and we took eli out of bed. She tried to cosleep with him however it still didnt seem to work. She ran to walmart at about 4am to get more tylenol and ibuprophen.

We called his doc and explained everything to her. She advised us to bring eli in for lab work and chest xray. She has said that he looks terrible. Heather and eli are at the er now talking to docs and waiting for results to see whats next.

I feel helpless. I cant help my little man feel better. Heather and i tried everything. Im at home trying to get better. I woke up feeling horrible. Heather took very good care of me. The kids helped out alot this morning. Im very luck to have such a great family.

I will update more when i hear from heather.
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Saturday, January 1, 2011

The sickness

All the family has gotten the bug except me. Luckly it has gone away quickly around 36 hrs has been the longest. After a day of rest heather is now feeling better. All the kids seem to be doing well except mr eli. He is still not doing great. Doc says to give pedilyte and to keep an eye on him. They have standing orders for direct. Fun stuff. Eli was up very early this morning very crabby. I hope he gets over it soon seems like he has had it for along time on some level. Crossing fingers for no admit. Really hoping not to get but not holding my breath.

We took down our christmas decorations yesturday. Wow it was a lot of work. Especially sine the tree was anchored to the wall. We just have alittle more to do today. We got all the decorations organized and put out in the garage. Now to enjoy the new year and all that it brings.

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