Stopping the TPN

We have decided that we are going to stop the TPN (IV nutrition) a week early. Oliver seems to be having more complications, pain, and fluid overload from this than anything. We gave it in the hopes that we would get a few decent weeks and then try to start food again but he has just been very unhappy. We will start very slow with about 5 ml's of Pedialyte an hour which is like having a tiny sip. If he does ok we will try to go up. If not we will pull back and make Oliver as comfortable as possible. We are terrified. I really really hope this works. Pray for the tummy! Oliver really needs a haircut as well, he is growing a mullet. Hospice found a volunteer that will come to the house. We are super excited to have a new big boy hair cut. Adina went to school today which was huge for her. It has been helpful to have a lot of people come see Oliver because she gets attention too. If you want to come and visit please don't be afraid to call. If we can't do it we will be honest. If anybody has been sick we just ask that you wait a few days. We will keep you posted about Oli's tummy. This will be a very nerve wracking few days to come. We are at the point where we don't even know how to pray. We pray for Oliver to stay with us but we also pray that he doesn't struggle and suffer anymore. So I guess I don't know where that leaves us. Oli again has had an increase in the Morphine and Ativan and continues to daily need more to even touch the pain. Thanks again for all of the love, support, food, and prayers! I know that I usually post pictures with my posts. Oliver still looks like our beautiful little angelic stud muffin but he also looks like he is in pain and that is not how we want people to see him. I will repost our favorite and the way we want you to think of Oli. This was Christmas Eve right after the organ stopped. Oli had been singing loudly with the music and decided to have a lovely solo at the end! Go Oli! (This was pre-trach when he could yell!)

Tired

We continue to just get through the day, sometimes hour. Oliver is having a hard time tolerating his TPN (food in IV form). He is retaining fluid and getting overloaded and it is making breathing hard and painful. Our option was to stop TPN and see how his tummy does. We are not ready for that option yet. They will lower the fluid volume in the TPN and keep the calories the same and see if that makes it any easier for Oliver. He wakes up for a few minutes but is usually in a lot of pain. We have a couple minutes where he will smile a little bit and we suck that time in as much as possible and hold on to it for the rest of the day. We are so lucky to have the best nurses in the world. Our hospice nurses have been great and are there to do all the extra work and make the calls so we don't have to. They are honest with us and help us make decisions that are really hard. Gillette has also been in close contact to offer support and resources. We are really blessed to have so many resources available, great nurses, and the best family, friends, and church community ever! Como Park Lutheran members have been bringing a meal every night. It has been SO helpful, THANK YOU!!
John and I asked the hospice nurse today for her honest opinion about what she was seeing with Oliver. She said that everyday we have been home we continue to make a lot of changes from increasing the morphine and ativan and decreasing fluids and giving meds to try and take the fluid away from the lungs. She said so far Oliver has not hit the plateau that they hope to see kids take for a while when going through this process. We are not giving up hope. John and I know and see the changes but we just can't seem to fully comprehend that it is actually happening. He is our little stud muffin and this just seems so unfair that he has to struggle like this. The nurse said that some kids still plateau for a while, some continue to decline fast, and few get any better. We so want Oli to get better, I think we both beg God to just give us more time with our happy boy. We have no control and we are going to snuggle and love and kiss Oli and follow his lead. As I said last night, this just all really sucks.

Adding on to tonights post........................................
Oliver just woke up and is having great difficulty breathing and is in a lot of pain. Please pray for Oliver. We are so scared.

Home

Oliver came home yesterday afternoon. It took a few nurses to get everything lined up for us to go home and the hospice nurse had everything ready for a smooth transition home. It has been a crazy 24 hours. Our nurses are not trained in on IV until they have their class tomorrow and Oli needed IV meds every hour last night so I was up a lot. The last two days in the hospital the nurses put Oli in a regular bed instead of crib so we could lay with Oli and snuggle him up! After a few hours of that I called John and told him to go and buy Oli a new bed because I was moving into his room. I now sleep with Oli and I study his sweet little face. I try to memorize every little detial about his face. Since he needed so much morphine last night they nurse came today and we started Oli on a 24 hour Morphine pump. Tomorrow we will have a physician come to the house to evaluate. The nurse is very concerned about how Oli is breathing so we need to get him checked. John and I take turns having our moments. I went to Target today and started to cry just thinking about all of the trips I have made there for Oli's meds. It just comes at random times. I guess it is anticipatory greif. Adina loves to lay next to Oliver and sings him lullabies. Tonight she asked our nurse why Oli has to sleep so much and wonders when we will wake him up. I keep hoping and praying that Oli will just pop out of this. This all just sucks.

Care Conference

Oli's conference went well. Met with the Hospice team and then doctors put in their thoughts. We will go home tomorrow. Would have been today but because Oliver is recieving his nutrition through his central line (new port they placed) they have to check electrolytes. So tomorrow after labs have been drawn and checked we are outta here. He will have to get labs at home too but the hospice team will come to the house, draw them, and take them away. We don't have to leave the house! We tried to feed Oli last night and it didn't work. Our plan is we are going to give Oliver a two week tummy rest. He will get his nutrition from an IV form or food. Fluids, electrolytes, vitamins... After two weeks we will very slowly try to reintroduce food into his tummy. If he cannot tolerate food we have made the decision to feed to comfort. This means as explained by our Palliative care doctor, when he seems like his mouth is dry we give him a little water or pedialyte. He does not feel like he is starving because his body has starting turning off that feeding center that controls hunger and thirst. This could be why his tummy is not working anymore. I asked him what he felt the liklihood is that his tummy will start to funtion again. He said he feels that it is not likely, less that 50 percent. I hope he is wrong and he hopes he is wrong, but I needed to ask that question. I know many people think that we can't "give up", "doctors are always wrong", etc. I know this, and we are not giving up. We are preparing and hope to God we are all wrong. The reason that we do not keep him on the TPN (feeding through his veins), is that it comes with great risks itself. Kids that are on this longterm get many painful infections and are in the hospital a lot. Long term use of this eventually leads to liver failure. So we could vent him and breathe for him, feed him in a not always so safe way, and give him lots more time. This would be lots more time in the hospital feeling very sick and highly medication. Or, we could keep him comfortable and have him home and give him good quality of life. Trying to do the "right" thing is hard. Watching your child suffer in anyway is hard.
Adina is doing okay, she is working with child life at Gillette and will be every week for a while. I don't really know how to explain this to Adina. I am going to go to the Center for Grief, Loss, and Transition soon to get help for us all. John and I are perhaps collected on the outside, at least John is. The emotions of it all hit at night when all is quiet and your brain won't turn off. I hate this. I pray every night that Oli is going to pop out of this. I also don't want him in pain. Thank you everyone for the love, letters, and personal prayers. They help us all get through the day.

Time to Go Home

Oli's surgery went well today and the port is placed. He is in a lot of pain and as usual pain management is always a challenge with Oliver. We had a pulmonologist come in today, not our normal doc but a very honest, blunt, to the point doctor. My favorite kind. He basically said that the meds we are giving to help him breathe are not going to work anymore. The best thing that we can do for Oliver right now is to keep him mildly sedated so his airway can relax and he is comfortable. Olivers tummy is not tolerating even pedialyte and he is again becoming puffy. The doctor said it is time for Oliver to be home with us and around his sisters so they can get lots of snuggle time with him. Everything now can be managed at home. We have a conference tomorrow with the hospice team and our nurses so everyone is on the same page. We had a little bump today trying to get Hospice covered. The reason.. they decided that Oliver isn't disabled because they didn't have it in the paperwork! I laughed when the social worker told me. What else could I do, it was either laugh, cry, or swear! I made some calls, he is now disabled again. Prayers would be great at about 10 tomorrow morning that John and I make it through. I know we have some big decisions to make that I would just love to run away from. It's time for Oli to come home with us now so we can love him up BIG time. Thanks for the prayers and love and support.

Hard Topic

A lot of our snow was gone in our yard, now it is back. We are all ready for winter to be done! I have not posted for a while, I have actually been avoiding doing so because sometimes it is nice to have things private for a while before we share them. Oliver did fantastic after his trach was placed. He was happy, smiling non-stop and life was great. We had a few bumps but managed with meds. Three weeks ago Oli had more difficulty breathing but his X-ray was clear so we decided not to have him admitted. The following day he became much worse and we called the ambulance for a ride to the hospital. The girls were in bed so John couldn't take us and Oliver cannot be transported unless we have two adults in the car. So basically I just called the ambulance for a ride. It ended up being pneumonia, he was in the PICU for one day and then we talked with our Palliative care doctor and Pulmonologist who are always sensitive to what is best for Oliver. We came up with a plan for how to treat Oli at home the best we could knowing that he could get worse. We were at that point of using Morphine for comfort needs not knowing where Oli would go. He did get better but very quickly became very sick again. We followed the plan to stay home but Morphine was not keeping him comfortable and his temp was 105.5 and increasing so we again are at Gillette. Oliver has also become very swollen around his eyes, face, hands, feet, and lungs. Here is where it is hard for me to write. After all of the testing it was clear that Oli had a little virus but his body no longer can tolerate even small colds. It is hard for him to be in the hospital and becoming very hard on Adina to have her family split up. With our doctors, whom we trust immensely, we have decided that we are going to have Oliver placed on the care of a Hospice team. They will work alongside our already existing home care nurses. We want to be very clear about what this means for Oliver. With adults it is understood that when they are placed in hospice they have a very short time left. With kids it is often very different, especial kids like Oliver. We do not know what condition Oliver has. We don't know why he continues to lose muscle tone, it is not because we don't work with him enough because he gets therapy and uses his equipment daily. It is just the way Oliver is. We don't know why he is getting sick more often, but it does seem that he is declining and is needing more medication to stay comfortable and well. Our goal for Oliver is that he stays at home where he is comfortable. He has advanced directives and is now DNR. He has been through so much and is so strong, but if his little heart stops, bringing him back would be very VERY painful and he would then be placed on a ventilator. We did not place the trach so we could have a ventilator but so he was comfortable and his airway was more stable. Tomorrow Oliver will have surgery to have a Port-A-Cath placed, which will give us access to use IV medications at home. This will help us keep him home and not in the hospital. Hospice will be a resource for us 24 hours a day. If Oli gets a temp for 105.8 again they can come and help us decide what to do. They have social workers, counselors, chaplains,... They will check on Oli once to twice a week, more or less based on need. Our focus is no longer test, test, treat, but comfort for Oliver. Obviously we will treat with antibiotics when we can, but with a virus we can only wait it out and see where Oli goes. Please understand that we are not giving up on Oliver. He could get better and have a great summer and be fine for a long time to come. We just need to be ready and prepare the best we can. We would appreciate if you have any questions to call or email us. Sometimes information changes when passed down the line. Oliver is a very strong little boy and surprises us everyday. It is hard for us to share this. There are times that we want to hold what we know and just keep it ours for a while or forever. Perhaps that is more of an attempt to try and not let the future come. Adina is struggling right now. She is just old enough to understand that things are changing. We have not explained to her that Oli may not be here forever, but on her own she has been asking a lot about death. She is seeing a counselor at Gillette, which is her special time. She cried much of the night last night because she wanted her Oli home. The best thing we can do for her right now is to not leave her because she gets very afraid when John and I are away at the same time. I will try to post again soon because I know you all care about Oliver. Don't feel like you can't call. We just don't pick up if we are busy=)