Preston's surgery update!

We were able to come home from the hospital yesterday and Preston was so happy to be home and be FREE. He has been playing with his toys, singing and generally unphased by the last two days. He even had a few bites of spaghetti sauce last night at dinner and he said yum yum!! His Grandma (Randy's mom) kept Luke while we were at the hospital and she got them some fun new cars that Luke has loved playing with. Luke really loves to play with cars!!

Preston's surgery went smoothly, but he did have some breathing issues again when he was extubated that landed him in the PICU instead of the regular pediatric floor. His respiratory issues were resolved fairly quickly, but they wanted us to stay the night in the ICU to be safe. Preston had a bronchoscope done by his ENT as they extubated him after his surgery and they were able to get a good look at his airway. He has laryngomalacia (a floppy airway). It is a congenital abnormality of the laryngeal cartilage. So when his airway gets irritated it collapses and restricts airflow. This is hopefully something he will outgrow and the cartilage should stiffen up.

So anyways, we had to stay in the PICU which isn't a fun place to be for a little boy who hates nurses touching him or for us either. Obviously in the ICU they are more concerned about taking vitals all the time because the situation putting you there is more serious. But Preston's breathing issues had subsided and he was screaming his head off and every time he started to settle down they would come take his temp or try to take his blood pressure and he would start screaming, wiggling and generally going crazy. So after about an hour of this I was about to lose it and go off on his nurse. Poor thing she was very sweet, but I was sitting in his bed, trying to hold him and get him to settle down and I was freaking out that the stupid wire was going to break. Randy and I, sort of panicked and said we have to get out of the PICU because this is not going to work. Also, you can't get a good reading if he's screaming, the pressure will appear high because it goes up when your screaming at the top of your lungs. So we told the nurse we wanted to be moved, and she got the head nurse, who called the ICU doctor and she said she preferred that we stayed here just because the ICU is more equipped to intervene if his breathing should act up again. She did agree to back off in monitoring his vitals and treat him more like a regular floor patient. She still made us keep the heart and lung leads on him so they could monitor his respiration and heart rate, but they at least weren't coming in to bug him every 15 minutes. I got really good at sticking those leads back on to get the monitor to stop beeping at you when the boys were in the NICU so that wasn't too bad. So once, they left him alone we were able to get him to calm down (with lot's of help from his favorite elmo videos) and Randy and I calmed down too ;-).

To prevent the wire from breaking again they wound the wire up around his head and covered with bandages so that the flimsy portion of the wire was under the bandages and the sturdy portion was the part coming out. I was still a little nervous about it so I basically sat up the whole night watching him to make sure he wasn't tugging on it as he rolled around in the bed and he was in a regular hospital bed so I was also scared he would fall off if he woke up and tried to get out. Randy and I have always called Preston "The Roll-Arounder" because he tosses and turns so much in his sleep.

Thankfully the precautions to keep the wire from breaking worked well and we were able to get the information they needed. His doctors felt confident after the monitoring that he does not have excessive pressure on his brain from his abnormal skull growth. This is very good news and now we should be able to watch him and wait to do another cranial vault remodeling a few years from now. The longer you can wait, the more permanent the results are, making it less likely to need another surgery. We have to keep an eye on his development and watch for plateaus or regressions, but hopefully he will be fine to wait a few years and we pray that he only makes strides to catch up developmentally. Then in a few years we will have to decide if another surgery is necessary or not, depending on how his head growth has been.

That's the long and short of it. Preston was supposed to start an intensive inpatient feeding therapy this month to get him eating solid foods and age appropriately. This was post-poned because of his skull issues. So we are back on the books at Our Children's House, a Baylor pediatric therapy hospital, inpatient feeding program. He should be admitted mid to late April. He will be actually in the hospital for up to 5 or 6 weeks straight, but I haven't actually let myself think to much about that yet. I know that it will be worth it in the end for him to be able to eat. A few months ago he was getting brave again and would try some things every now and then, and it is heart breaking to watch him try to eat something so small as a dissolvable puff and him gag and throw up from it. He is now back to not putting food close to his mouth again because we think he got frustrated from not being able to eat. My prayer will be that he catches on quickly because feeding therapy is brutal. Last year the day patient program we did with the boys nearly sent me over the edge. Now that was with trying to juggle both of them, but we got to go home at the end of the day. The hard part is that you have to keep going past the tears, the screams, the gagging, the vomiting and the psychologist or speech therapist sitting next to you doesn't make it any easier. They tell you to talk like a robot when you give them the command to "take your bite" and then be super happy and praising when they take their bite. About 100 times last year I wanted to throw the spoon at the lady and say is this happy enough for you!!! But you know what you get through it and you do what you have to do for your babies.

On Monday night in the PICU waiting room I was sitting out there eating the Mico's enchiladas that my Mom brought me (enchiladas means it was a bad day-that's my comfort food) and my Mom started talking to this other Mom sitting out there. That's so not me to start carrying on a conversation with stranger so I sat off to the side until it was starting to be awkward that I wasn't joining in. So I walked over and introduced myself and her name was Jennifer too. I had already heard that her baby had leukemia and as some of you know leukemia families hold a special place in my heart because my best friend had leukemia when we were in middle school. Jennifer was the sweetest, most kind hearted person I have met in a long time. We sat their sharing our stories with one another and what her child has gone through was unbelievable. Her son is 18 months old and in remission from AML (just like my friend had, and just like my best friend Christina's cousin just recently had) and I felt embarrassed that I had thrown such a huge fit about moving Preston when I should be thankful his breathing issues hadn't been so severe they couldn't get him off the vent. Jennifer's son had coded several times since the beginning of his illness and it's truly a miracle that he has made it through it all. I know it's all relative when it comes to what your going through, but every time we have been at the hospital and are maybe feeling a little down or sorry that Preston is having to endure this I am reminded that it can be SO MUCH worse. Jennifer and I both cried a little when were talking. We talked about how things could be so much worse and how you have to be thankful for what you have. She had to watch as a family in the room next door to there's child passed away and sit there holding her terribly sick but alive little baby. Those are things no parent should have to go through. My heart goes out to Jennifer, her son Lucas and their family and they are now on my prayer list.

Randy and I take turns on who we hold when we put down the boys at night and I was rocking Luke last night and thanking God for his health and safety. No matter what I am facing and when I get down about things, I try to thank God for the blessing he has given us and I try my best not to dwell on the things that are lacking. So I encourage you tonight when your holding your babies to hold them a little tighter and thank God for the blessings he has given you and pray for the families who are struggling through any parent's worst nightmare - a child with cancer or any life threatening illness or disease.

Thank you all for your prayers and support!! It feels good to start moving past Preston's head issues and start getting to his feeding. I am just going to focus on how wonderful it will be to watch him play this summer and eat some table food just like Luke. Thanks again for all the prayers and offers to help! I will be taking ya'll up on that while Preston is in the hospital for his feeding therapy. We will definitely need help with watching Luke and Randy always loves it when people bring food!

I also encourage you to register to be a bone marrow donor or if your pregnant think about donating your cord blood. You can register to be a donor at http://www.bethematch.org/ and if your pregnant and interested in donating cord blood call the hospital your going to deliver at and be persistent about getting an answer as to whether or not they collect cord blood to send to a donor bank. I just looked at the be the match site and they also have info about donating cord blood. No one ever told me about this when the twins were born and we were able to bank Luke's cord blood, but from what I have read now donating is better because you may never need your child's. Jennifer told me that even if they had banked Lucas's cord blood his own wouldn't have worked and her other son's wasn't a match. So please look into donating cord blood - it is what is saving Jennifer's son Lucas's life and many more are looking for a bone marrow donor - so think about it!!