Just a quick update to let everyone know that Beckham is finally home after his 17 day hospital visit. He is feeling and looking much better, but he still is having problems with eating and taking his meds by mouth. Because of this he was sent home with a NG tube. We are hoping to get that out soon. We wanted to upload a picture to this post so that you could see how much better he looks but our computer is acting up. I will post more later.
-Kim
Wednesday, August 27, 2008
Friday, August 22, 2008
Update 8/22/08
Beckham is still in the hospital but he is doing much better. His fever finally broke and that has helped him get a little energy back and helped his blood pressure get more stabilized. His sores on the outside of his face still look pretty bad but they do look much, much better. Beck was also able to get his IV out because he is now off of fluids and they have changed him from Morphine to Loritab. He is now getting paid meds "when needed" and we hope to ween him off of those soon. The biggest thing that is keeping him in the hospital is the fact that he still won't eat by mouth. Although the sores on the outside of his face look better, the sores on the inside of his mouth are still quite bad. I tried to feed him some bread and cheerios yesterday and as soon as he brought them to his mouth his whole body started to shake because it was so painful. He tried really hard to eat them, but soon after getting them in his mouth he spit them out with a mouth full of blood. Poor guy! He is still being fed NG and that is going...alright! He pulls the tube out every chance he gets. He is now getting Pediasure through the NG tube. They bumped up his calories from 27 to 30 and it has really made a difference. When we brought him into the hospital he weighted 19.13 lbs and now he weighs 21.4 lbs. He still is pretty swollen and I am sure some of his weight gain is due to that but he looks pretty cute with a little chub on him.
Beck has also started to smile again! His smiles are small and infrequent, but we will take what we can get. He is also getting pretty stir crazy at the hospital (that makes two of us) and he is ready to go home. We are hoping to get to go home this weekend. Hopefully that will happen. Nate starts school on Monday and my parents need to leave this weekend. I don't know if I can handle Gwen all day at the hospital if Beck does not get to go home. Lets pray that he starts to eat and can come home!
Thank you so much to everyone that has reached out to us during this time. I am so grateful for the meals that have been brought to me while Beck has been in the hospital. Hospital food is pretty nasty and expensive and it has been so nice to have a home cooked meal every day for lunch and dinner. We are so lucky to live in such a great place with such great people.
We will keep you all posted on Beck's progress. Keep him in your prayers. Please also keep this little sweetie in your prayers. Mia is a little newborn that was born with a similar heart defect as Beck and is waiting for a heart transplant. I have been able to get to know this family and they are amazing and have so much faith. Mia is such a cutie and such a fighter.
Thanks again for everything.
-Kim, Nate, Gwen & Beck
Beck has also started to smile again! His smiles are small and infrequent, but we will take what we can get. He is also getting pretty stir crazy at the hospital (that makes two of us) and he is ready to go home. We are hoping to get to go home this weekend. Hopefully that will happen. Nate starts school on Monday and my parents need to leave this weekend. I don't know if I can handle Gwen all day at the hospital if Beck does not get to go home. Lets pray that he starts to eat and can come home!
Thank you so much to everyone that has reached out to us during this time. I am so grateful for the meals that have been brought to me while Beck has been in the hospital. Hospital food is pretty nasty and expensive and it has been so nice to have a home cooked meal every day for lunch and dinner. We are so lucky to live in such a great place with such great people.
We will keep you all posted on Beck's progress. Keep him in your prayers. Please also keep this little sweetie in your prayers. Mia is a little newborn that was born with a similar heart defect as Beck and is waiting for a heart transplant. I have been able to get to know this family and they are amazing and have so much faith. Mia is such a cutie and such a fighter.
Thanks again for everything.
-Kim, Nate, Gwen & Beck
Sunday, August 17, 2008
Update 8/17/08 & 1 year transplant anniversary
Greetings from the hospital (unfortunately). Actually now it is greetings from the PICU. We were on the general floor before, but Beckham is requiring a little more care and PICU seemed like the best alternative because the other alternative was being transferred to Iowa City. I love the hospital in Iowa City, but I really want to stay in Des Moines, especially while I still have other sick family members.
What a year it's been eh? Truthfully, I know that we would not change anything. This year has changed us and made us completely different, better people and we are so grateful that we were chosen to be Beckham's parents.
-Kim, Nate, Gwen & Beck
Beck is doing somewhat better. He has not spiked a fever at all today. He has had a fever for almost 10 days straight and not getting one today would be a big milestone. He sores are also looking better but worse at the same time. They now look like huge open sores instead of large blisters on his face. It seems like all you have to do is barely touch one of his sores and he is gushing blood (seriously). But I know that his sores have to get to this stage in order to get better. I did try for the first time in a week to feed him by mouth instead of the NG tube and it was very unsuccessful. I will give him a couple more days before I try again. Beck's ear infection also looks better. We switched him to a new med because of his allergic reaction and so far he has reacted just fine to it. His Tacro level is also a little more under control. His dose was cute in half to compensate for the large spike and his level has finally started to slowly drop to the normal range. Hopefully this drop in Tacro level will give him the immune system that he needs to fight off this virus.
The rest of us are also doing a lot better. Gwen is pretty much back to normal. My parent are here helping us while Beck is in the hospital and I am grateful that they will be able to watch Gwen so that Nate can continue to mend. Nate is doing a little better. His fevers have stopped, but he has a mouth full of sores to deal with. I think that he has a whole new appreciation for how sick the kids have been because he can barely talk and eat. I am also doing better. My brain was a little fried from having to be in the hospital again with Beck. It brought back a lot of frightening memories from last year. My mental state must be taking a beating because on Friday I went home to visit Nate and Gwen for a couple of hours. When I got back to the hospital I sat down on the chair next to Beckham's crib and looked down and I was wearing two different shoes. I don't know how I did not notice because they are not even the same height as each other. Oh well, that is very typical Kim behavior!
Beckham's 1 year anniversary of his transplant was yesterday. It was a very bitter sweet day for us. Bitter because we had to acknowledge the passing of the sweet baby who's heart went to our Beckham and also because we had to celebrate this anniversary in the hospital. But it was so sweet to celebrate the precious gift that gave our baby life. We don't know how to express our gratitude to the donor family for the choice that they made to donate their baby's organs....but all we can say is "thank you" for giving us the gift of life when a life was taken from you. Thank you for choosing to take a tragic, heart breaking event and turn it into a miracle. We love our little guy more than we can express and we treasure everyday we have with him and we owe it all to the donor family. We would also like to thank all of the hospital staff that worked so hard to save our little man. We sure love you all and can't even begin to express our gratitude to you.
Friday, August 15, 2008
Update 8/15/08
Beckham is still at the hospital and I don't see him coming home anytime soon (darn-it!). His body does not seem to want to let go of this virus and other problems seem to show up daily...sometimes hourly. The most important thing is that so far none of those new problems have to do with his heart (big sigh of relief). I think it is more my heart that is suffering because I can't stand watching him suffer so much. But I am his mother and that is my job!
Beck looks pretty awful right now. He is so swollen that he can't open his right eye and I am sure it will be that way for the left eye soon. His blisters are now in the "scab" stage and crack and bleed, but this is a good stage because it means that he is on the mend (from the blisters). He has also been diagnosed with an inner and outer right ear infection. They went to treat the infection with Rocephin and about an hour after he was given the med he had an allergic reaction to it and broke out in a huge rash. He was immediately given Benedryl to counteract the effects of the Rocephin. Because of a combination of the Hand, Foot and Mouth virus and the ear infection, Beck has completely refused to eat by mouth. An NG tube was put in his nose yet again. He has already pulled out 5 NG tubes previous to this one and I am sure that it will not be long before this one has the same feight. Beckham also is still having super high fevers. They are so high that he has been given Ibuprofen on top of the Tylenol. Transplant recipients are not supposed to have Ibuprofen, but we have been given permission to let him have it so that we can get his fevers under control. Another problem that has come to pass is that is Tacro level is totally out of whack. Beck's Tacro level needs to stay between 9-16. His level has been around 11.8 and because of this they lowered his dose by .6 so that he could have more of his immune system to fight off this virus. When they went to check on his Tacro level (thinking that it would come back low and they did not want it to be too low) it had for some reason risen to 30. Now we had to stop his Tacro until we can take another level and see if it has changed at all. All in all, Beck is remaining pretty comfortable. He is on a continuous Morphine drip (they had to change the Fentanyl to Morphine because the Fentanyl was making his blood pressure rise) and sleeps most of the time. I am just glad that he is too small to remember this when he is older. I wish that I could say the same for me.
I am not totally sure but I think that is about it to report on (I could be wrong, but it is 4:00 AM and I do not have to best frame of mind right now). I have been staying at the hospital pretty much non-stop with Beck because Nate also has the Hand, Foot and Mouth disease and is quite sick. He is a super hero and has been taking care of Gwen on top of being so sick. I saw them both for a little while yesterday and it was so nice to see that Gwen is getting better.
Thank you so much to all of the those that have reached out to us during this time. I hope that I have not offended anyone by telling them "no" to their offer for help. The only reason I have said no is because I do not want anyone to catch this virus from us. It is very contagious and obviously very miserable. Thank you to those that have not taken "no" for an answer and have come and visited and brought us meals and so forth. We also appreciate all of the prayers on our behalf. Please continue to keep Beckham in your prayers. He has a long way to go. He is super sick, but he is not as sick as he was at this time last year. Tomorrow with mark his 1 year anniversary of his heart transplant. I have such tender emotions at this time for all that we have been through this past year and for the sacrifice that was made so that my precious baby could still be here. I have so much gratitude for all that we have. Please also pray for the donor family of Beckham's heart. They are also going through an anniversary of loosing their sweet baby and I can only imagine their heart ache.
I am going to try and get some sleep now (good luck to me!). Thanks again!
-Kim
Beck looks pretty awful right now. He is so swollen that he can't open his right eye and I am sure it will be that way for the left eye soon. His blisters are now in the "scab" stage and crack and bleed, but this is a good stage because it means that he is on the mend (from the blisters). He has also been diagnosed with an inner and outer right ear infection. They went to treat the infection with Rocephin and about an hour after he was given the med he had an allergic reaction to it and broke out in a huge rash. He was immediately given Benedryl to counteract the effects of the Rocephin. Because of a combination of the Hand, Foot and Mouth virus and the ear infection, Beck has completely refused to eat by mouth. An NG tube was put in his nose yet again. He has already pulled out 5 NG tubes previous to this one and I am sure that it will not be long before this one has the same feight. Beckham also is still having super high fevers. They are so high that he has been given Ibuprofen on top of the Tylenol. Transplant recipients are not supposed to have Ibuprofen, but we have been given permission to let him have it so that we can get his fevers under control. Another problem that has come to pass is that is Tacro level is totally out of whack. Beck's Tacro level needs to stay between 9-16. His level has been around 11.8 and because of this they lowered his dose by .6 so that he could have more of his immune system to fight off this virus. When they went to check on his Tacro level (thinking that it would come back low and they did not want it to be too low) it had for some reason risen to 30. Now we had to stop his Tacro until we can take another level and see if it has changed at all. All in all, Beck is remaining pretty comfortable. He is on a continuous Morphine drip (they had to change the Fentanyl to Morphine because the Fentanyl was making his blood pressure rise) and sleeps most of the time. I am just glad that he is too small to remember this when he is older. I wish that I could say the same for me.
I am not totally sure but I think that is about it to report on (I could be wrong, but it is 4:00 AM and I do not have to best frame of mind right now). I have been staying at the hospital pretty much non-stop with Beck because Nate also has the Hand, Foot and Mouth disease and is quite sick. He is a super hero and has been taking care of Gwen on top of being so sick. I saw them both for a little while yesterday and it was so nice to see that Gwen is getting better.
Thank you so much to all of the those that have reached out to us during this time. I hope that I have not offended anyone by telling them "no" to their offer for help. The only reason I have said no is because I do not want anyone to catch this virus from us. It is very contagious and obviously very miserable. Thank you to those that have not taken "no" for an answer and have come and visited and brought us meals and so forth. We also appreciate all of the prayers on our behalf. Please continue to keep Beckham in your prayers. He has a long way to go. He is super sick, but he is not as sick as he was at this time last year. Tomorrow with mark his 1 year anniversary of his heart transplant. I have such tender emotions at this time for all that we have been through this past year and for the sacrifice that was made so that my precious baby could still be here. I have so much gratitude for all that we have. Please also pray for the donor family of Beckham's heart. They are also going through an anniversary of loosing their sweet baby and I can only imagine their heart ache.
I am going to try and get some sleep now (good luck to me!). Thanks again!
-Kim
Tuesday, August 12, 2008
Update on our House of the Damned...
It has been a long time since I posted on here, but Kim is at the hospital and I've joined the kiddos in the ranks of the sick so I'm stepping up and doing the mommy-blogging.
Gwen just started tonight to feel a little bit better. She is still sick and her mouth sores are still really hurting her, but today I got the first smile and even laugh out of her since the day we took her to the ER last week. I have to admit though it was easier for a sick person to watch another sick person than one in pain, mad at the world, but starting to get some energy back. When she was sick and just rolled around like a slug she couldn't get into much trouble...I'm sure she'll come back with a vengeance.
Beck on the other hand isn't feeling so hot. He is still in the hospital and has become pretty lethargic. Because of the pain they have him on a continuous Fentanyl drip and that goes into an IV they had to start yesterday because of dehydration threat. His medical team in Iowa City has lowered the doses of his anti-rejection medications temporarily in order to give a boost to his immune system.
Kim is super-mom, as always, and hanging out with the little guy. Because of my state of being she was able to call our bishop tonight and he gave Beckham a blessing.
As for Kim and I we are trying to figure out what horrible acts we performed in past lives to warrant this sudden onslaught. I mean what could we have done? Were we Nazis? Mobsters? BYU Cougar fans? What?
We debated posting the picture of Beck, but decided it shows how bad this hand, foot, and mouth has been to him. Hopefully a few days from now he'll start to look like our little dude again.
(How Beckham looks when taken over by sickness...
...and this is a picture of Gwen when sick and in pain)
Gwen just started tonight to feel a little bit better. She is still sick and her mouth sores are still really hurting her, but today I got the first smile and even laugh out of her since the day we took her to the ER last week. I have to admit though it was easier for a sick person to watch another sick person than one in pain, mad at the world, but starting to get some energy back. When she was sick and just rolled around like a slug she couldn't get into much trouble...I'm sure she'll come back with a vengeance.
Beck on the other hand isn't feeling so hot. He is still in the hospital and has become pretty lethargic. Because of the pain they have him on a continuous Fentanyl drip and that goes into an IV they had to start yesterday because of dehydration threat. His medical team in Iowa City has lowered the doses of his anti-rejection medications temporarily in order to give a boost to his immune system.
Kim is super-mom, as always, and hanging out with the little guy. Because of my state of being she was able to call our bishop tonight and he gave Beckham a blessing.
As for Kim and I we are trying to figure out what horrible acts we performed in past lives to warrant this sudden onslaught. I mean what could we have done? Were we Nazis? Mobsters? BYU Cougar fans? What?
We debated posting the picture of Beck, but decided it shows how bad this hand, foot, and mouth has been to him. Hopefully a few days from now he'll start to look like our little dude again.
(How Beckham looks when taken over by sickness...
...and this is a picture of Gwen when sick and in pain)Saturday, August 9, 2008
Update 8/9/08
Sorry for the lack of posts. We have just barely returned from our vacation in Utah. We had a great time, but we are thrilled to be home!
Upon being home just one day we had yet another hospital visit. The surprising part is that the visit was not for Beckham, but for Gwen. Gwen spiked a super duper high fever on Tuesday evening and by the middle of the night her fever had reached around 104, she was inconsolable and drooling like crazy (very odd). We thought that it was best to take her to the ER. Once at the hospital they discovered that her white blood count was elevated and she was diagnosed with the Hand, Foot and Mouth disease. This illness has only effected her mouth (so far). We can't say the same for Beckham because he woke up yesterday morning with a fever and sores all in his mouth and on the bottom of his feet. We had to take him to the ER last night and he was admitted to the hospital. He will hopefully be released soon if we can get his fever under control and he starts eating and taking his meds. They put an NG tube in him three times already and he has pulled out every single one. I can't say that I blame him because I would sure hate something up my nose. Let me tell you that this sickness is awful. The kids are just beside themselves in pain. Their mouths are covered with sores everywhere (literally). Poor little Gwen and Beck just want to cuddle all day (very, very odd...but really cute for Nate and I). We will be grateful when this is over. I am sure glad that Nate has not started school yet and that he can be home with me to help me with our sickies.
The rest of us are doing great. Beck had a cardiology appointment yesterday and his heart looks great. His Tacro level is also stable for the moment. He really is doing remarkable for what he has been through in his little life (can you believe that it has almost been a year since his transplant?). While we were in Utah we kept getting comments on how Beck looks like a normal, healthy, happy baby. Everyone expects a "sickly" looking child and that is just not even close of a way to describe our little guy.
That is all for now. I will post pictures from our vacation soon...well, as soon as my little kiddos get feeling better and Beck is out of the hospital.
-Kim, Nate, Gwen & Beck
Upon being home just one day we had yet another hospital visit. The surprising part is that the visit was not for Beckham, but for Gwen. Gwen spiked a super duper high fever on Tuesday evening and by the middle of the night her fever had reached around 104, she was inconsolable and drooling like crazy (very odd). We thought that it was best to take her to the ER. Once at the hospital they discovered that her white blood count was elevated and she was diagnosed with the Hand, Foot and Mouth disease. This illness has only effected her mouth (so far). We can't say the same for Beckham because he woke up yesterday morning with a fever and sores all in his mouth and on the bottom of his feet. We had to take him to the ER last night and he was admitted to the hospital. He will hopefully be released soon if we can get his fever under control and he starts eating and taking his meds. They put an NG tube in him three times already and he has pulled out every single one. I can't say that I blame him because I would sure hate something up my nose. Let me tell you that this sickness is awful. The kids are just beside themselves in pain. Their mouths are covered with sores everywhere (literally). Poor little Gwen and Beck just want to cuddle all day (very, very odd...but really cute for Nate and I). We will be grateful when this is over. I am sure glad that Nate has not started school yet and that he can be home with me to help me with our sickies.
The rest of us are doing great. Beck had a cardiology appointment yesterday and his heart looks great. His Tacro level is also stable for the moment. He really is doing remarkable for what he has been through in his little life (can you believe that it has almost been a year since his transplant?). While we were in Utah we kept getting comments on how Beck looks like a normal, healthy, happy baby. Everyone expects a "sickly" looking child and that is just not even close of a way to describe our little guy.
That is all for now. I will post pictures from our vacation soon...well, as soon as my little kiddos get feeling better and Beck is out of the hospital.
-Kim, Nate, Gwen & Beck
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