We are sorry for the delay in posts...we have all had a very busy couple of weeks!
After Beckham was moved to the general pediatric floor he was able to make quite a bit of progress. Beck is now completely tube-less! His PICC line was the first to come out, followed by his NG. We worked very hard to get his NG tube out. This was not easy because it would mean that Beck would have to be eating and taking all of his medication orally. The feeding was the harder of the two. Beckham was nursing quite well for the first week of being fed by mouth, but once he was taken off the morphine he started having withdrawal symptoms which made nursing too hard for him to concentrate on. He was also losing weight and breast milk alone was not giving him the adequate calories in his diet needed to gain weight. He was also being given fortified breast milk (extra calories added to the breast milk) feedings NG at this same time, but was having trouble keeping everything down. Beckham was then started on a bottle. He was not very fond of the bottle at first and his spitting up seemed to get worse. Once he got the bottle down the nurse decided to do an experiment and take his NG tube out and see if he could handle all feedings and medications orally while still gaining weight. Beckham actually did better than expected and never had to have his tube put back in. In fact, he started spitting up less. Since then his weight gain has been slow, but steady. The doctors and staff have been so impressed with his progress and stated that Beck is their first patient to be able to nurse post transplant.
We were told that if Beckham started gaining weight then he would be allowed to go home. This became a reality when we watched his weight numbers increase but our hopes were shot when we started to notice a problem with Beckham's urine output. Beckham would go hours (5-8 hours) without peeing. A number of doctors started looking at him to determine the problem. Beckham was born with 2 inguinal hernias (like he needed this problem on top of everything else!), and also was not circumcised after birth due to the fact that he had larger issues to deal with!! The doctors thought that these problems might be the cause of his trouble peeing. The surgical and urology teams were called in to examine Beck (the surgical team was for the hernias and the urologist for the circumcision). The surgical team decided that Beckham did not have hernias, but hydro-seals. This was a relief because they do not pose immediate problems and can be fixed at a later date. The urologist determined that Beckham will need to have a "surgery" in order to be circumcised due to the large hydro-seals, but he did not want to do this to Beckham until he is six months old. We actually have the procedure scheduled for February. The out come of all of this was that the doctors believe that Beckham is fine and his peeing problem is not a big deal.
Beckham was released from the hospital on Thursday September 6, 2007. This was only 3 weeks post transplant! He left the hospital with being on only 3 different types of medications. He is now down to only 2 medications (that is almost nothing for a transplant patient). Beckham is doing great at home. We are all learning to adjust and are so glad to be in our own home and beds! I am especially glad to be home because I never left Iowa City once Beck was transferred up there. Nate was the lucky one and he spent quite a few nights at home in Des Moines during our month away. All I can say is...I love my bed and I have missed sleeping in it!
Beck is actually a very good baby and would sleep through the night if I let him (this is a huge change because Gwen was an angry baby and up all night!). I wake him up twice a night to feed him and I have to make sure that his feedings are right on time. Beckham's rejection medications have to be taken at certain times of the day and Beckham is not allowed to eat 2 hours before and 1 hour after the times his medications are due. I am constantly setting my alarm clock to make sure that I wake up. I'm sure that it will become a normal routine soon. Beckham does struggle some during the day due to the fact that he is going through drug withdrawal from all of the pain medications that he was on. We are hoping that this will pass soon for his benefit. It is very hard to watch him go through this. The drug withdrawals and the medication times are the least of our concerns because they hardest thing we are dealing with is trying to keep Beckham alive with Gwen in the house. Gwen definitely loves her brother...but the problem is that she loves him a little too much!! She wants to be wherever he is, even if there is no room for her. A number of times we have found her trying to sit with him (or on him) in his bouncy chair.
(Ten bucks says they aren't this loving 15 years from now)We can't express enough our gratitude to the staff and medical team at the University of Iowa hospital. The care that Beckham received was incredible and we are so thankful that he was sent there. We know that we will be back at the hospital weekly and will see many of them again. We are also grateful for the kindness that was shown to Gwen. I am sorry to those at the hospital who Gwen "snubbed." You must remember that she is still the Queen!
We are also grateful to all of our friends and family members and those that we did not even know who prayed and supported us through this ordeal. We know that we have a life long battle ahead of us, but we are so grateful to have Beckham in our home...especially when we did not know if he would ever be able to come home!
On a important note, we need to add the following detail:
Beckham's transplant brought on a lot of problems and one large problem is that he is now considered "immunocompromised" (a state in which the immune system's ability to fight infectious disease is compromised or entirely absent). Beckham will not be able to be taken into public places for a year and visiting Beckham in our home will require you to be in very good health. We ask that if you wish to visit, that you are not in large groups and that you have not had an illness, been around someone with an illness or think you may be getting an illness. Also, if you have had the "Flumist" flu vaccination nasal spray you will not be able to be near Beckham. Beckham cannot receive any "live" vaccines (chicken pox, mmr, etc.) and the Flumist is considered a live vaccine. You can still be around Beckham if you have had the Flu
shot instead. We have plenty of hand sanitizer and sanitizing spray at our home and we ask that you use this whenever you are here. Please know that this is not meant as an insult!! We follow the same precautions. Gwen thinks that the hand sanitizer is a treat and immediately licks her hands after we put it on her. Gross! We will be grateful when a year is up and we are able to come out of our "bat cave!"
Love and thanks,
Kim, Nate, Gwenyth K, and Homeboy Beck
(Beckham helps me with my cardiac quizzes)
(You'd think we could find one picture where he wasn't crying...Gwen will make up for it)
