Friday, May 31, 2013
I am so very happy and thankful to tell you how God brought our boy through his fecal transplant today. In October he had a really tough time with the anesthesia, so much so that the nurses were telling me that it was scary for them! So answer to prayer #1: It can be very difficult putting a child of Preston's age under general anesthesia, sometimes there is lots fear and fighting of the mask they use, sometimes there is a shaking and twitching that looks like seizures, and my most miserable experience as a parent, is holding my baby as they go limp and lifeless in my arms with their eyes rolling back in their head as they go under anestheasia BUT NONE OF THAT OCCURED TODAY!!! Preston essentially just relaxed and wasn't nervous. He essentially seemed to just fall asleep in my arms. Aswer to prayer number 2: NO issues at all with anesthesia!!! Answer to prayer #3there were no complications getting to where they needed to go in order for the transplant to be successful, it can be difficult in little guys, but God opened the doors. Answer to prayer #4 No bleeding! This was my anxiety as when Sam had a procedure close to Preston's age he had a big hematoma form in his stomach that ruptured and he had a big bleeding episode. Answer to prayer #5 we are HOME!!! We didn't have to stay over, we have already spoken with the doctors a few times since we left and will probably be calling again in the morning, but we are home! We have some hurdles to get through but we are home and getting through them here... Pictures from today... This is pre procedure. Preston was so happy even though he hadn't eaten in so long. He was happy playing with new toys. And they actually brought the mask they use for anesthesia to him to play with and get used to. They put something in it to smell like strawberries so he kept smelling it. He even let his little toy car smell it... Once they brought him to the OR it felt like eternity before we got to see him again. It was really not even two hours, but it felt like forever. When we were first brought to him he was completely out cold. But looked completely peaceful and comfortable. He slept for almost an hour and a half before the anesthesia finally wore off. When he woke up he was not a happy camper for a bit but he eventually was ok. Since then he has had what appears to be severe pain in his bottom and belly. The doctors have instructed us to give him Tylenol but he is very uncomfortable and the Tylenol doesn't seem to be completely helping. He is trying to be such a trooper, but he is definitely hurting. Poor Sammy has been through so much medically himself that he has really been upset about all of this with Preston. He was so upset yesterday when Preston couldn't eat and was really questioning the doctors plans. Tonight he just snuggled with P and tried to make him feel better. They fell asleep snuggled on the couch...
Thursday, May 30, 2013
Sam had a hockey game this week on Tuesday. He seemed fine prior to us bringing him to the game, but lasted only a few minutes before he was asking the coach to pull him out. When he came out he was saying that his stomach and chest hurt and was almost in tears. I feel so bad for him. I hate that he has such significant pain at times that it stops him from doing the things that he absolutely loves to do. Preston had a blast at the hockey game this week. He was running around all over the place trying to hit the ball with the hockey stick. On Wednesday I took Sophia into Tufts Floating Hospital for Children. Ever since we saw her pediatrician at the beginning of the month for the diarrhea, we haven't had much improvement so she sent us to GI, just to make sure all was ok. The drive into the hospital and the drive home was absolutely horrendous. But Sophia was so awesome. She usually gets nauseous but she did really well both ways. She allowed them to take her blood and she didn't even whimper or cry. She was polite and allowed the doctor to ask her all kinds of questions and responded appropriately. I am so proud of her. The doctor is thinking that things will just get better, but is checking some labs to rule out food allergies and crohn's disease. It will take a few weeks to get those results back. Since Sam's reaction to the IVIG and the high blood pressure because of it, we have been going to our pediatrician just to keep tabs on it. PRaise God yesterday it was fantastic. 90/60!!! I am unsure of if we still need to keep going now that it is back down to normal. It is hard to believe the road with Preston for the C. diff will be complete tomorrow! I am just so amazed how God has worked this situation so perfectly. We will be heading in tomorrow, leaving our house between 04:30 and 5 am. It will be a long day but I am already rejoicing in God's healing power in my baby boy. Prayers are greatly appreciated.
Monday, May 27, 2013
My kids were so excited that they got to be in a Memorial Day parade today! They woke up before 6 this morning in excited anticipation! They just couldn't wait. They got to ride with their friend Alex, in his dad's old military jeep. They said it is more fun being in the parade then watching it, and they didn't get all the candy they normally get. It is a win win situation!!! Preston wasn't overly interested in anything to do with the parade, except that he loved the fire engines. All he was really interested was his vehicles that he brought. After the parade we went back to Alex's house and had a nice afternoon enjoying the sunshine together. It was a great day! It was finally sunny and a little chilly but not too bad. The kids played outside for most of the afternoon and then came in to make face masks....
Today as you celebrate Memorial Day with your family and friends, remember the reason for this day. The sacrifices that have been made, the lives that have been forever changed fighting for your freedom. God bless America and God bless our military :-)
Sunday, May 26, 2013
I will be honest, most days I am exhausted and overwhelmed with having three young children, two with multiple medical problems, working nights, being pregnant with a high risk pregnancy, and just being all around crazy busy all the time. I am often so frustrated when my husband comes home and complains about the mess or the clutter, and the truth is, I simply can't keep up. But today when Preston was eating his lunch and he saw how messy he was, or how all day long Preston is just like a little tornado going through the house leaving a trail of disaster behind him , maybe he got a tiny glimpse of what a day with the kids is like, although he never truly gets it because he is never here all day every day with them by himself. When he watches them I get everything out and prepared for him. Oh well a day in the life of a full time stay at home mom, and a part time working out of the home mom... Sammy decided that instead of letting daddy pull his fourth loose tooth that he would do it himself. Not sure if people that don't have bleeding disorders bleed as much as Sammy does when a tooth comes out but it is pretty gross. He got blood on our couch, and all over his hands and face, and then he walks up to me to show me.... YUCK!!! He goes to the bathroom where Matt is trying to help him get the bleeding stopped, and gets blood on the walls, the counters and all over his face. He was so proud of himself :-) My baby lost all four of his front teeth...
Today we were blessed to go to church and worship together as our family and friends joined us. Our church congregation prayed over Preston today, knowing that Friday is the transplant. We are believing and praying for miracles this week! He was so cute while they prayed over him, just kind of looking around with huge eyes and a little smirk. He is so cute!!! I can't believe it is almost june and it is so cold. There were actually supposedly flurries overnight, although I didn't see them. Today it is in the 40s. We are hoping for a nice day tomorrow to celebrate Memorial Day. The kids have some really cute clothes but it is so cold to be wearing them. Our Pastor and church body are very respectful and thankful for our troops. There was a nice tribute today to them as well as some patriotic songs. We also heard from Convoy of Hope which is currently on the ground in Moore Oklahoma working clean up the destruction left from the tornados. My brother in law Tim is still there with CIA (Christ in Action) also working to clean up the devastation. Matt's parents heard from Tim, yesterday, unfortunately his back is bothering him, so would you please lift him up in prayer? That God would supernaturally heal his back, and that he would be able to continue bringing God's love and hope to the people in Oklahoma? Thank you so much!!!
Saturday, May 25, 2013
As a proud American, I have been blessed to be surrounded by many family members who have put themselves in harms way keeping us safe. I don't take for granted one minute of time I get to spend with my family. This Memorial Day and always I am so proud and so thankful to live in a country with such brave men and women! Thank you to all our military. Past and present. May God richly bless you!!!
Friday, May 24, 2013
In one week Preston will have his transplant. I still can't believe the way that God has answered this prayer. For those of you that don't know, we had been fighting with our insurance for months to get the transplant approved. There were multiple denials. And on Patriots Day the GI doctor called us to tell us that he had gone to the board of directors and CEO of Mass General and told them our story, telling them that because of our insurance Preston would have to have a permanent colostomy, at one year old!!! He told them how Preston has been so sick and in the hospital multiple times, and now has been on months of a strong antibiotic that is known to cause hearing loss and kidney damage. And then praise God Mass General decided that they would pay for the transplant! I am beyond thrilled and thankful as we approach next Friday that God has answered this prayer. My little stinker wasn't cooperating for pictures today... Our babysitter has a beautiful new baby named Hadley. She is two months old. All three kids are completely enamored with her. Jenn comes once a week or so and watches the kids for a few hours in the morning. We all love having her here. And the kids are beyond thrilled to take turns holding Hadley. I will be honest though, having this little beauty in my house, makes me a little overwhelmed thinking about what it is going to be like in a few months with a newborn in the house again...