June 2007 Archives

Sorry I have not updated here. I have been trying to fix our computer. Things are going relatively well. We are still down a pound and cannot get Simon to drink to save our lives so I'm going to have to start putting liquid through the g-tube and hope it doesn't affect how he is eating because he continues to eat quite a bit without trouble which is such a blessing. I hope the liquid resolves itself and Simon starts to love drinking as much as eating. His IGG is up to 505 which is awesome and tells us he is making his own even without having the ivig infusions. We are to start tapering cyclosporine again so please pray it does not affect Simons donor counts. We did vntrs yesterday so will have them back this afternoon. Pray they are up and stay that way even with starting to take him off the immune suppressant. So that is about it here. We are scheduled to go to clinic next Tuesday for pentamadine infusion and to meet with the immunologist and then we leave for St. Louis for the IDF conf. We are excited to be meeting two other NEMO families there and Dr. Orange who is constantly researching NEMO. Please pray all goes well and that we have a successful, safe trip full of information and fun. Thank you and God Bless. Tracy and David

I have not felt this lighthearted in such a long time. I think today I feel happier than I have been in almost two years. The stress is lifted because Simon is doing awesome. The TPN is going well and he is tolerating it but also it has given his stomach a rest and the diarrhea is gone. It also has allowed us to let Simon feel hungry without us hooking his tummy up to g-tube feeds everynight he is eating like a champ and even asking us for food all the time. My heart is so happy to tell him "no Si, too many cheetos is not good for your tummy". So lets hope he continues to eat in this fashion and maybe in a month we can get him off the g-tube for good. That would be amazing. We now think the elecare and feeds was just too much for his stomach. So we'll see. To top the day off our vntrs came back 96% overall with myloids at 97% so there is a slight increase in donor cells. Like I said we are soooo happy and pray this trend continues. Thank you all so much for praying. Please keep doing that because its helping Simon to have all of you talking to God and believing. Thank you and God Bless. Tracy and David

After paging the nurse on call at 1:30 am with worry Simon was having side affects due to the TPN and screaming and throwing himself around uncontrollably, we finally got him calmed down at 3 am and got 3 hours of sleep. He woke up very tired and crabby but rebounded once we got on the road to the hospital. We were able to take in stool samples and give another good one while we were there. The one we brought in showed some blood in the stool but they said its not surprising given he has had it running through him for over a week now. We think he is on the road to trying to heal and we will continue TPN for one more week along with giving him food as tolerated and wanted (which seems to be more than before). His skin is looking fine still but his teeth are really bothering him so I'm putting a call into the dentist to see how we can break them through. We had vntrs drawn today so pray they are at least 95% throughout all of this. His other levels were ok, some we need to watch but nothing serious. One interesting thing since all this started since we stopped the elecare (his formula) he has less gagging. Not sure if thats due to him not being so full or what but I have wanted to get him on milk and off the bottle for a long time so this might be a great time to try once we are allowed to give him that again. Again, please pray for good donor numbers and for gut healing for Simon and to keep him free of infection. Also maybe say a prayer that Dave and I might be able to get some sleep. Ha ha. Have a great Monday. Tracy

Well the last 48 hours have proved interesting, frustrating and stressful. Without going into deep detail the home health nurse arrived at 10:30 pm tried to get the pump to work until 11:30 pm and we never got Simon hooked up to tpn. He went all night and until tonight was not on the iv. Long story short, we supplemented to the best of our ability, screamed at people, cried to people who cared to listen (thanks Denise, Patti and Terri) and finally exhausted just waited, and waited for it all to get straightened out. Noone paying the amounts of money we are paying for these services should be subject to this type of incompentency. Okay so despite a crazy evening and early part of the day we managed to enjoy time with our kids, ice cream, parks and Dave and I even managed to get in a candle lit shared bowl of pasta with wine on our little oasis of paradise (our deck) after all kids were in bed. We pray that the tpn helps Simon to feel better tomorrow as today he was crabby (something he never is) and droopy and just not himself. I am turning in to try and get at least 5 hours of straight sleep as I have had none in two nights. So please continue to pray for healing and for our vntrs (donor cells) to be strong and untouched unless they go up in donor cell percentage. God Bless and enjoy the Blessed Sunday. Love Tracy and David

Well its 9:40 pm and we are still waiting for the home health nurse. Simon and the girls are fast asleep and I have spent the last hour + trying to get ahold of anyone who knows who was suppose to come out here to help us figure out how to hook up the TPN so Simon could get some nutrition (which we are not sure was even mixed to his needs since its only allowing for 540 calories and he need 1100 daily). That is what I meant by its not easy getting a home healt nurse out. We are not happy. As much as you don't want Simon to be in the hospital, you also don't want to deal with this and end up doing something wrong. So she is on her way, from orland park, which is not close to us. Its absurd.

Simons results came back from the stool sample that they were able to scrape and so far no rota virus or c-diff, so providing the sample was adequate enough he must just have the bug we have had in the house and since Isa fought it in 4 days my hope is he can do it in 8-10 which would make him feeling better after this weekend. Pray for that for him. His cyclosporine level is down to 46 which is due to the diarrhea but its worrisome to us since that is what has been keeping his donor cell % up and we now will sit and worry/wonder what the vntrs drawn on monday will show. Please, again pray they are 95% or higher in every aspect. One positive thing was that his igg level actually went up 20 points which is pretty awesome indicating he is making his own igg so that is great. Hopefully all other things will start to fall into place. Thank you all for the prayers, please, keep them coming. God Bless everyone. Love Tracy and David

Well a preliminary report from Dave is back and they are wanting to put simon on TPN (its iv nutrition) for a week. He has lost 2 pounds and he cannot afford to lose any so 2 pounds is alot for him. I knew this morning he looked too thin. He has never really been on TPN so this to me feels like a major set back and I am very scared for a number of reasons. The good news so far is that they said he could come home and we could administer it at home. That means getting home health out today (which isn't always easy) and us having to have his port in his chest accessed for a week with us flushing it with heparin so it doesn't clot and making sure he doesn't pull it out, which too will not be easy given how active he always is. They are trying to get a stool sample but because he has vomitted or had diarrehea and has not eaten anything so far they have not gotton one. Hope that they do so we can tell what is going on with him. Please continue to pray that this virus or bug leaves his system quickly and we can resume the healing process for a complete recovery. God Bless. Please enjoy the day, it is a gift of the greatest power and if you are just going about your day, you are lucky. Love Tracy

Tonight I ask for a special prayer to help get Simons system back on track. He has so much diarrhea that the doctors are worried he is dehydrating. He has to go into clinic for iv fluids tomorrow and they may admit him depending on how he checks out. They also want a stool sample to check and make sure what it is. I am asking for prayers to keep him out of the hospital and home with us. We have been giving him pedilite and I guess after so many days of that it can actually contribute to the stooling so we have stopped that this evening and will be giving him his regular feeds. Please pray he tolerates it without vomitting as he has not really had any calories for a week. I'll check in tomorrow and let everyone know how it went but I'm confident with your prayers we can see Dave and Simon come back home after a check up. I also want to say Yeah to JT for finally getting some change and hopefully some relief. Way to go JT and the Browns. Hang in there. Love Tracy and David

Well the fear we walk with daily has happened. Simon has some sort of virus perhaps rotovirus which would be really bad since he has no working immune system to fight it. He started friday night with vomitting, now he has diarrhea so bad that if he eats or drinks anything 10 minutes later its in his diaper in the same form it went it and liquid. His vomitting is not as bad but he manages still to do it once a day. I have had to stop giving him elecare (his calorie formula) because even 2 ounces set him to the bathroom sink to have it violently come back up. He has an appetitie and will eat small amounts but they don't stay in him. This means his meds most likely are not staying in him as well. His sister has a form of the same thing which she got one day after Simon so we are not sure how he got it but it did pop up the day after our clinic visit to the hospital last week.

I have been trying to support him with alot of pedilite and gatorade and take care of him, keep him away from his sisters and take care of his sister who just feels lousy and is very cranky. I will be taking simon to clinic again tomorrow just because of this and will get his levels drawn along with an igg level as I feel it is very important to get ivig at this point. His skin is flared up again and red and starting to get inflamed so the question remains does the ivig help or hurt this situation. Its very scary. We will be making some hard decisions in the next day or two and if we can obtain a perfectly timed stool sample we can rule in or hopefully out, the rotovirus. Please pray this is just a short term thing and that we can go back to just healing. I know JT has dealt with this alot in cincinnati and he could use your prayers as well. These boys need and deserve a break so please use your prayer time to ask for this virus to be gone sooner rather than later. My isa could use a prayer too. Thanks God Bless Tracy

spent the evening saying goodbye to a friend who I have known for many years. It was a very hard night to see someone always so full of life, who always laughed and smiled and always showed you that she was happy to be living in the day to have been defeated by a cruel disease that took her life slowly at first and with a vengence at the end. May my very dear friend rest in peace and may her children and husband have the strength to continue to be a family and find hope and love in those around them. My heart goes out to them and I will reach out in the days to come.

I was sent a CD by another friend of mine by Mark Schultz. Specifically with a son in mind on the CD entitled "Hes my Son" about the authors friends 14 year old son who battled lukemia and what the family went through for a year. I had to read the words, digest them even before I could listen to it but today and tonight I listened good and hard and it broke my heart to hear the pain that so many parents feels as they watch their child battle a chronic illness. "I"m down on my knees again tonight. I'm hoping this prayer will turn out right. see there is a boy that needs your help, I've done all that I can do myself.......as it goes on "can you hear me? am I getting through tonight? can you see him? can you make him feel all right?If you can hear me let me take his place somehow, see hes not just anyone....hes my son." This has hit me and hard. I was able to spend the evening with very good friends who have the hearts of gold and the love of a million people to give to another and in all of that my heart was weighed with the fact that after all my effort today Simon still got upset at bedtime and vomitted up all his days food. Its so upsetting. So frustrating. Please pray for him to completely heal and be able to be the boy we dream of him to be and be able to play and love and laugh like we all do. To lift the burden of worry up once and for all and for life to go on in a happy sense. Our vntrs were back 95% today (that makes up happy), cyclosporine level higher than ever but we will leave the dose and igg down to 432. We are not completely comfortable but will definatley readdress on the 11th when we go back. Please pray for complete healing and no infections or worries for Simon. we appreciate and thank everyone for all of the prayers and God for watching over Simon and us and please pray we continue to need them. God Bless Tracy and David