Saturday, January 29, 2011
Friday, January 28, 2011
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.
Wednesday, January 26, 2011
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
I will try to update later when computer becomes available.
Thanks to all of your prayers and postive thoughts
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
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.
Thursday, January 13, 2011
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
Sunday, January 9, 2011
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
Saturday, January 8, 2011
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.
Friday, January 7, 2011
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.
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.
Thursday, January 6, 2011
Wednesday, January 5, 2011
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.
Tuesday, January 4, 2011
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.
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.
Monday, January 3, 2011
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.
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.
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.
Sunday, January 2, 2011
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.
Saturday, January 1, 2011
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.
HAPPY NEW YEAR