Thursday, January 31, 2008
Wednesday, January 30, 2008
Today was a wonderful day for our family. At noon Joseph's doctor came by and asked if he felt like going home today. The answer was yes and so here we are tonight our whole family together at home. Joseph was in the hospital for 24 days. There is still a lot to do. He will need to take it easy and continue to recover, along with staying away from crowds. He also will have to have regular biopsys and see the doctor twice a week besides. We already are going back for the next biopsy on Friday but it is good to be home for a day of relaxing before that. Joseph has already had some friends drop by tonight and it is easy to see how friends and family make a difference in his recovery. We are grateful for all the prayers in our behalf, it has certainly made a difference in all that Joseph has been through. Now we will work on the routine of taking a ton of medicine and checking blood pressure, temperature and pulse twice a day, but oh it is so good to have him home with us!!!!
Tuesday, January 29, 2008
On Monday this week, after his check-up, Joseph's doctor mentioned that they are still monitoring a few chemical levels in his body, but that if all went well this week, they would send him home on Friday. This is of course only tentative, and still may change. They also took out the last of the drainage tubes from his stomach on Monday. Needless to say, he felt better almost immediately. Things are looking up for him.
We have also learned the rules for visitors after he does come home (this week or next).He can have any visitors at home as long as they are healthy and they have not been around any sick people, like at home. This is very important because any sickness minor to us would be terrible for him. We are supposed to call the hospital if he has a cough, a sneeze, a runny nose, etc., etc. We will also ask all visitors (for Joseph or anyone else in the house) to wash their hands and/or use hand sanitizer when they enter. Otherwise he can have any number of visitors at once..and he really wants visitors. He cannot go out to places where there are groups of people where we can't control the potential for random sickness. So he will not be going to church, the mall, school, etc., etc. for quite a few months. He can go to the park, around the block, camping, and even the theater if he only goes during the 'off' time like the middle of a week day four weeks after the release.
Everyone is excited for him to come home, nobody wants him to get sick, so we will be somewhat cautious.
Monday, January 28, 2008
Wednesday, January 23, 2008
Our latest update continues with good news for Joseph. He had his second biopsy yesterday and the result is that there is no rejection happening. We are very excited about that. He also has his anti-rejection meds just about set to the levels they want him to be on. This is a major step to being able to come home. The only big thing left to address for him is that he has a tube draining fluid from his abdomen and it doesn't seem to want to stop. The doctors are looking at ways to aggressively treat this problem. Today they started a new medication and gave him some IV albumin (to help with the protein deficiency in his body). They are hoping to be able to try clamping off the tube for a couple of days just to see what his body does. We are hopeful that this will be resolved soon and Joseph will be able to come home. He is in better spirits than over the weekend but he is still pretty homesick. However, he has gotten really good at bossing the nurses around and telling them what to do and how to do it. We are hoping that this weekend they will also let him out of his room to walk around and get some exercise. If they get the anti-rejection meds at the right point this will happen and this will help his attitude also.
Something else that we have learned about is a way to email Joseph. He will not get it directly and it takes about a day to get the message to him but if you go to Primary Children's website ( http://intermountainhealthcare
I think that about sums up what is happening on the hospital front. We appreciate all the love and support and prayers from friends and family. This is an amazing but very difficult journey for our family and you make a huge difference in our lives.
Sunday, January 20, 2008
Now two weeks later, Joseph is noticing the difference again. His heart works like never before in his life, it delivers oxygen and nutrients more effectively than ever to his mind and body. As a result, he feels better than he has in a long time. Best of all, however, is that his mind has regained its sharpness. He corrects Wendy's math when she keeps score during a game. Joseph has always been bright, but now he is getting hard to beat at any game that requires strategy. He can play his favorite video games again with only minor inconvenience from the steroid-induced shakiness in his hands. And he is discovering that he likes reading, never his favorite activity. He notices that it doesn't take the full effort of concentration that it used to for him. I'm excited to see what a new heart does for his physical energy. If it is like the transformation in his mind, nothing will stop him.
Keep the prayers going. We are confident that they help. Between our friends and family, people in your church congregations, and the temple prayer lists, a goodly number of people prayer for him several times a day. Thank you all for all you have done. In addition to the benefits for Joseph, the rest of our family is reaping the benefits as well. Wendy and I have the energy to spend time with Joseph and yet to work out a schedule that lets one of be home with Kent, Laura, Heather, and Nathaniel each day as well. It has been important to maintain as normal a life as possible at home. As a result, the others are dealing with the stress better than I expected.
Thursday, January 17, 2008
Joseph continues to amaze us with how well he is doing. He still tires quickly, but he wants to do stuff. He sat in his chair most of yesterday, went for walks, and ate like a 14 yr old boy. The tiredness will wear off as he fully recovers from the surgery.
Yesterday he had the first of many heart catheter procedures to assess and keep tabs on the amount of rejection his body is subjecting the heart to. They put a longish iv-type tube in his neck and insert tools to measure blood prssures in the heart and in the lungs. They also take a small sample of heart tissue to biopsy. One of the cardiologists on the transplant team didn't like the pressures, an indication of rejection, and they started him on a higher dose of steroids almost immediately. Then everyone (i.e. Me, Wendy, and Joseph) sat on pins and needles all day waiting for the biopsy results to verify the level of rejection going on. We always thought that rejection was a fact, it was just a matter of degree and treatment. We were still pretty nervous all day while we waited for word. I didn't hear anything all day until Wendy got home at about 8 pm. She had just gotten the results a few minutes before leaving for the night. There were no signs of rejection. Joseph was given a clean bill of health to move out of the ICU and into a regular room upstairs. He will still have to stay at the hospital for another biopsy or two (one each week) before he will get the all clear to come home.
I've included drawings made by the heart catheter doctor at the time he did the procedures. These are based on ultrasounds and dye injection x-rays of Joseph's heart. The new heart is basically the text-book version, the old heart, however... well you can judge for yourself. To view pictures, click here
We don't know the rules about visitors in his new room yet. It is in a protective isolation area because of the immunosuppresives and heightened risk of infection. But his health and spirits are as well as can be expected. This is all an answer to our prayers and yours in his behalf. Thanks
Wednesday, January 16, 2008
Tuesday, January 15, 2008
I'm happy to report that all is going well for Joseph. The procedure on Saturday that I already described was a smashing success. He is up and about, eating well, and generally in good spirits. At this point he is recovered from the surgery in the same way anybody else would be after a week. He got up three or four times for a walk yesterday, he doesn't need hardly any help getting in and out of bed, and only minimal support while walking. The support is more because it makes us feel better than because of any real need on his part. He is only taking a pain pill infrequently and then it is Tylenol w/codeine and not the stronger stuff. They got him off the morphine drip pretty fast. He had a morphine addiction when he was a baby, so we were glad to have him off of it quickly. It is hard for me to describe how well he is doing and how well he looks. There may yet be setbacks, but none seem likely.
The main thing now is that they need to monitor him for a couple of more weeks to be sure that there are no signs of rejection. The drugs that he needs have mostly all been switched over to pill form that he swallows. They all need to be that way before he can come home. And then there is just the long monitoring process to be sure all is well before they let him out of sight. They want to make sure that the medications levels in his blood are correct and that they aren't messing up his liver or kidneys. After he comes home, he will still have to go back for tests two times a week for another six months or so and then it calms down to once a week and then one every two weeks and then only once a month. So we have a year of driving ahead of us. Thanks, to Mom & Dad and Helen & Neil for gas money.
Well, It has been a good week overall for Joseph. His new heart seems to be very healthy and strong. The first few days after surgery, even though he can answer questions and interact with us, are mostly a blur. Today he was feeling well enough to sit up and work on a puzzle book that a friend gave him, and watch a movie. The last couple of days he has wanted to do those things, but has dropped off to sleep pretty fast. Its amazing to me that less than a week after this kind of procedure that Joseph can be up, walking, sitting, and eating whatever he likes.
No stay at the hospital would be complete for Joseph with out a set back or two. He has never been the textbook 'easy' recovery patient. When his pacemaker was first installed, the surgeon put in an extra lead wire just in case one of the other two didn't work properly for some reason. This turned out to be a good thing because a year or two later one of the leads did indeed stop functioning. So plugging the spare wire into the battery was a relatively simple procedure that only required a small incision to get access to the pacemaker. Implanting new leads requires major surgery through the ribcage to gain access to the heart and that wasn't needed in order to use the extra lead wire. Well, the point of this little story is that the surgeon doing the transplant was unaware that the faulty wire was still inside of Joseph, so when he removed the pacemaker, he only removed the two wires he could see, not the other one. When this extra wire was noticed on his x-rays after surgery, it was in the chest cavity and didn't seem to be causing any problem so the decision was made to let it be. It been in there for six years or so now without problems. As long as it stayed put it wasn't likely to be an issue. However, on today's x-ray, they noticed that the wire seemed to be shifting around. Not a bad problem this minute, but potentially, it could perforate the bowel or cause other problems in the future. So Joseph went back into the operating room for about two or three hours today to have that wire removed. It is a blessing that taking out the wire is not nearly as big a deal as putting it in would have been. The doctor was able to remove it using the laparoscope tool that just needs two or three small holes. The is the same thing they use to do gall bladder and appendix operations that are common out-patient procedures. So no real big deal at all, just a small molehill in Joseph's recovery. It shouldn't add any extra time to his overall stay.
When I talked to Wendy at 4:30, she said Joseph was up fine with minor tenderness in his abdomen. Compared to the setbacks Joe has had with other operations and stays in the hospital this one is pretty minor.
I want to thank all of you for the prayers, kind words, gifts, etc. that you have been sending our way. I am confident that the reason things are going so smoothly is because of the combined faith of all of you in Josephs behalf. If you want to send a card or package for Joseph, it would be best to just send it to our house and we'll take it up to him. One of us is with him every day. Our address: 701 North 900 West, Orem, UT, 84057
Brad & Wendy
Sorry if it feels like we are a little slow letting you know how Joseph is doing. Life has been crazy for us. Joseph is doing great!!! Today he had his chest tubes removed which is a major step in recovery. He was also able to get up and sit in a chair this morning and later on this afternoon he walked next door to a new room in the ICU. This room has a window that leads to outside instead of the hall like his last room. I can't say it is a room with a view though. It looks out onto the roof, but he will be able to tell what the weather is like every day. He should be out of ICU in a few more days. Joseph's new heart is working perfectly and there have been no complications, which is a first for Joseph in many ways. We are grateful for all the prayers in our behalf and so appreciate the love and support from family and friends. It really does make a difference. Another thing to note - the phone # we gave you was the wrong one (we were given the wrong one) I would give you the new one but it changed again today and I forgot to find out what the newest # is. We will let you know. Also, the question has been asked if you can send him things such as cards and flowers, and other such stuff. The answer is yes to any and all. The only thing not allowed is latex balloons - all balloons must be mylar. Otherwise, he can have anything he wants including any food he wants. Hope your day is going as well as ours.
Love, Brad and Wendy
Just thought we'd drop a line every couple of days to give an update. At some point we'll cut back because progress will be slower, but for now we'll try to keep you posted.
Last night went very well. Joseph woke up a little and was able to answer a couple of easy questions. You can imagine that the opportunities for conversation are limited with a respirator tube stuck into his throat. The nurse told us that they were going to try and remove it this morning. For a while, having conversations with him will be like talking to someone with a concussion. He'll wake up, ask what time it is, how long he'll be there, what everything is, etc. and then go back to sleep. When he wakes up again we'll have the same conversation. Once they taper off a couple of the pain medications, that will also stop and he'll remember better between naps.
The big thing they watch for now are signs of rejection. They monitor his blood chemistry very closely so they can adjust the anti-rejection drugs as needed. It is given that his body will try to reject the new heart. It is a foreign object and will be treated as such. Normally that response saves our lives before we even think we're in danger. In the case of a transplant, the opposite is true. So they watch his liver and kidney function and pretty much anything else. He will be on strong doses of immuno-suppressive drugs for a while. Eventually, most will be discontinued, but he will always take some form of anti-rejection medication.
That's kind of the long way around to saying that he looks good. We got to see him at about 4 pm yesterday. His color is good. His abdominal swelling from before surgery is reduced, his hands and feet were warm to the touch. So far everything is as good as could be hoped for. Thank you all for your continued prayers. They make a difference.
If you don't want to get these potentially longish ramblings, send me an e-mail and I'll stop sending them to you.
While Joseph is in intensive care, we must turn off our cell phones. You can call (801)662-2406. That is the phone in his room. If we are there, we will talk. If we are not, the nurses won't be able to give you any information about him. If you can't find us by his bed, try us at home (801) 374-9687 or on our cell (801) 372-2073. The intensive care unit really doesn't want a lot of visitors except parents and grandparents. They're not really even too excited about brothers and sisters. So, please don't plan to go visit Joseph without talking to us first.
Thanks again for everything,
Just a quick note and update. For those who may not have heard, on Sun Jan 6 at 3:45 pm we got the call for Joseph's heart transplant. We arrived at Primary Children's Hospital at about 7:00 pm and they took him into surgery at about 1:00 am Monday morning. All has gone very well. The heart arrived at approximately 5 or 6 am and has been transplanted. He is off the by-pass machine. It is 2:00 pm and they are still waiting for some bleeding to stop before they can close him and move him into the ICU. That should happen relatively soon (that's hospital time, however, not normal time). At this point everything is positive and we expect him to be moved this afternoon.
Thanks for the prayers and concern. We'll write or call again when there is anything more to know. Until then we just get to wait (and wait, and wait, and wait, and ..........).
Monday, January 14, 2008
Sunday, January 13, 2008
Joseph is doing great. He had a Heart Transplant early Monday morning and has since then been in recovery. Everything has gone wonderfully. His body and the heart are doing great together. Today his Family went up and visited him and he looks great, better then ever. Color has returned to his face and he is awake enough to hold a decent conversation. He has enough tubes and wires coming out of his body to give Darth Vader a decent competition. He has been recieving various gifts from people which are greatly appreciated, it makes his day to know others are thinking of him. We are hoping he is moved out of ICU to another room soon, it will make the visits a bit less chaotic. Joseph is doing well, we thank you all for your prayers.