Our Loves

Wednesday, April 20, 2011

Ups and Downs

Yeah! Preston made it back to school finally yesterday, but then this morning he woke up with fever and it's been coming and going throughout the day along with his energy level. Poor guy! He missed school today and I think he won't be making it again tomorrow either because he went to bed with fever. I am planning to call the ENT in the morning, just to make sure we are past the window of being concerned about an infection, but I am sure it's just a little bug. So without anything further, here you go with the recap of Preston's surgery and recovery.

His surgery went well and they removed Preston's tonsils, adenoids and put tubes in his ears. Dr. Hung did another laryngo/bronchoscope which showed that his laryngomalacia is still present (the cartilage has still not fully hardened and is flopping over into his airway even when he is not having symptoms or stridor). He showed us pictures of the "floppy" area of his larynx and explained that the area that is flopping over into his airway needs to be surgical cut away basically. He did not feel like it would be best to do that during this surgery because Preston had too much going on with his tonsil being removed. He suggested doing this surgery sometime this summer before the next cold and flu season. Definitely not what we wanted to hear and honestly Randy and I have not even gotten that far to even really discuss this. My feeling is that I want to do some more research about it, (cutting on his larynx) consult another doctor and possibly wait and see if the fall brings about another laryngomalacia episode before scheduling a surgery. The normal thing is that this cartilage should stiffens up on it's own as a child ages, but most doctors say that happens by the age of 2 1/2, so I guess he feels like it will not harden up on it's own any further. Further research will be required and I really would like to keep Preston out of the hospital for a while so we will probably look back into this issue in the late summer, unless of course he has a breathing episode between now and then.

Presty with his new buddy Scamp the scruffy puppy!

Preston did stay the first night in the PICU and that went smoothly. This is the first surgery that Preston did not have any respiratory distress issues afterwards and we were so very thankful for that. He had some periods of dips in his oxygen saturation levels into the upper 80s, so he was on oxygen throughout that first day and then the first night, but they said that was mostly due to the strong pain meds he was on (fentinel and morphine). Preston first started to eat some yogurt the next evening after we got moved to the regular pedi floor and then later he started drinking some milk so we were able to leave the hospital after night 2. My Mom kept Luke while we were there, and I am so grateful!! Luke actually threw up during lunch at his school on the day of Preston's surgery so my Mom got to quickly run in and see Preston in the PICU after he was out of surgery and then she had to run home and pick up Luke from school. He was fine and most likely just had one of his gagging issues while he was eating. Nannie got him to eat like a champ the rest of the day so he made it to school the next day. My Mom can always get Luke to eat! They had fun and planted some flowers and went to breakfast together. I am so glad he does well being away from us. This is actually the first time I noticed a little acting out once we got home though. He was seriously needing attention from us that Friday evening and Saturday once we got home. I know he doesn't understand where we were gone to with Preston. He just knew Preston was sick once he got home and that we had been at the doctor (for 3 days). I try to remind myself what it must be like from his 3 year old perspective. I am so thankful that Luke feels so comfortable with my Mom and that she is there for him when we need to be away with Preston. I really don't have to worry about him and that is so comforting to Randy and I.

"I guess I'll drink this if you let me out of here!"

It was a different experience being at Medical City and not living so close by like we used to. Previous Medical City experiences we would just run home to shower and my parents would stay at our house so they were close by. So this time we were a little more isolated, but my sweet friend Paige came by Wednesday night and I got a chance to have a quick chat with her and she brought us an awesome home cooked dinner - yummy pork tenderloin, mushroom risotto, peas with prosciutto, chocolate chip cookies and the best prickly pear italian soda. It was soo great and totally hit the spot! Sadly, I do get a lot of comfort from good food (so does Randy) so that dinner really helped my stress level - no lie.

We had pricelined a hotel room for Wed night because we knew we were going to be in the PICU and they have a one parent staying the night rule. So Randy left the hospital around 10pm to go sleep at the hotel and came back at 6am so he could get in before lock down (PICU goes on lock down between the hours of 6:45 - 8:00 both am and pm during nurse shift change - typical of most ICUs, PICUs and NICUs - Medical City does the if you're in, you're in and if you're out, you're out rule). Well, when Randy got in the car to head back to the hospital that morning some lovely hooligan stole our freaking side view mirrors off our car in the hotel parking lot. SERIOUSLY! That is the 3rd incidence of vandalism that Escalade has had and the one before was totaled when crazy vandals poured house paint all on the inside of our first one. I am scared our insurance is going drop us! So when Randy came to relieve me, I headed back to the hotel to have a lovely conversation with the hotel manager before I got my turn to sleep until checkout. Needless to say I took up my friend Paige on her offer to stay at her house the next night, so Randy covered that night's shift and I had a wonderful night sleep at the Brauer B&B. I even got a blueberry waffle for breakfast!!!

The hotel manager was actually very nice (at first) and said he would put a rush on getting in touch with their insurance company and getting back to me. They had a security guard out in the lot and cameras. The manager said you can not see anything on the video because the front of our car is not in view. Now, he isn't being quite as nice anymore. He won't return mine or Randy's calls and I have not received a call from their insurance person. We will see how that all turns out. It is really sad that criminals out their steal from people and they have no clue the circumstances that person is in. The mirrors have turn signals in them, so they will be way above our $500 deductable. This incidence makes me more mad probably even then when our car was totaled. You don't really think your car will be vandalized at a hotel that has a security guard and you don't really think about your car much when your child is in the ICU. I think I was angry that I was even having to worry about something so stupid during that time. I hope the hotel at least covers our deductible, but at this point it's not looking so good. Anyways, just when we were missing living so close to Medical City we got a nice reminder of one of the reasons we moved.

Currently, Preston is still only drinking milk and eating about 1 to 2 yogurts a day. He has definitely lost some weight, but I am putting heavy cream in his milk/carnation instant breakfast and putting about a 1T of flaxseed oil in his yogurt. Hopefully he will get past this fever stuff and I may start next week to pushing his eating a little more. He was having a lot of pain upon waking and he was waking in the night until last Friday. I have read that it's painful when you wake up because your throat dries out so much when you're sleeping. I am glad he is past that! We had flashbacks of the first few months we were home with the boys when they were babies and waking up in the 4 o'clock hour is just wrong!! I think that might have given me a few more months of stalling Randy about wanting to have another baby. ;-) Preston is already sleeping so much better and not having any apnea issues what so ever. Even when he was waking up in the night, by morning when he woke up for good he was so much more refreshed than before. I am so happy he is getting some good quality sleep now!!

Preston did have two small bleeding issues, the last being Friday night in College Station (we went with my Mom for Parent's Weekend), but thankfully his bleeding stopped quickly both times and I hope we are about out of the woods for that scariness. I just need to get him feeling better and getting him eating some pureed food again. That will be our next hurdle!

I don't think I could say this enough, but I am so thankful, touched and amazed at all the people who pray for Preston and our family. This was Preston's fourth surgery and I'm not even sure how many times he's been in the hospital and we are by no means naive enough anymore to think it will be his last. It is so hard to sit in that waiting room, just waiting and waiting to get to go back and see your baby again. This time it took them forever after Preston's doctor came back to tell us he was done to when we were able to get to go back and be with him - 30 min. My mind started playing mean tricks and worrying that he was having trouble breathing and getting off the ventilator, but I just tried to bring my self back to praying and remembering that many of you were praying, too. The power of prayer is amazing, truly amazing and for all the time you spend in prayer for my family I thank you!!! Until next time...

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