Ronan is home again. He came home Saturday afternoon. He has had a couple of sugar low episodes but we were able to stabilize him with juice. He has an appointment with the Endocrinologist tomorrow morning. We are still waiting for his blood test to tell if he has the diagnosis they think he has. I was told by one person it would take a week and a half and it's been about two weeks but someone else told me it would be weeks but didn't specify what that meant.
His hospital stay was pretty nice. After he left the PICU he was put in one of the new pediatric rooms. They are huge and he had plenty of room to walk around. His surgeon was very pleased with how Ronan was doing. His surgeon kept saying how wonderfully unexpected the outcome of this newest surgery has been. God took care of Ronan once again.
Some carolers stopped by while Ronan was in the hospital and left him a stuffed unicorn. He wasn't too fond of it and kept throwing it or hiding from it so Jadzia gladly adopted it into her baby collection.
Tomorrow we are having the Fullmer side Christmas. Thanks to my in-laws we are staying at a hotel with an indoor water park for two nights. The kids are very excited. Ronan will be going to open his presents tomorrow night then he will be staying with my mom. This is mainly because he is terrified of water. This is a new phobia he picked up after a couple of hospital baths. He has been undergoing water therapy but the process is slow and until he isn't as scared he gets sponge baths.
Also tomorrow or rather in an hour and a half Inara will be 18 months! I can't believe my baby girl is a year and a half old. Where does the time go? Every minute is precious as they grow so quickly. She definitely has a personality all her own.
She is opinionated and tries to mother Ronan which he doesn't like too well. She is very sweet to him and rubs his back when he is laying down because he has sugar low. When he won't eat or drink she says his name over and over like she's chiding him to eat. If he cries she runs over and hugs him or rubs his back. She seems to just know when he's having a hard time.
She is talking in short sentences and knows about five colors and can identify several letters and their sounds. She also knows several animal sounds and her bear roar is complete with a bear claw demonstration. She dramatically lets you know how she is feeling. When she is happy she is full of squeals and giggles and when she's mad she throws her arms up and down in protest.
She also believes she is as big as the big kids and must be included in all the fun. If you try and take her away from a big kid activity she says "Big girl!". Going back to Ronan she calls him "Baby Ronan or MoMo." But don't dare call her a baby or she insist "Big girl!!" She also loves playing peek aboo and will try and find anything to hide behind then she will pop her head out with the hugest grin and yell "Peek you".
Her favorite book is "If You Give a Mouse a cookie" and watch out if you start reading it to her because she will want you to read it about ten times in a row. She is growing up so fast. She has her 18 month check-up Wednesday morning so I'll know all of her stats then.
I had to post this picture of how Ronan walks around the house. He likes to walk with his hands folded behind his back like a proper little gentleman. I find it very adorable.
That's all for now. I'll post more on the Fullmer side Christmas in a couple of days.
To end the post here are recent pictures of the big boys.
Ronan's surgery went better than anticipated. The doctor thought for sure that it he was going to have to do a full open surgery which would entail a big incision down Ronan's chest similar to heart surgery. Fortunately he was able to preform the surgery laproscopically. This will mean significantly less recovery time.
Ronan has been in the PICU since his surgery and is going on his second night. The pediatric floor was recently renovated and the rooms in the regular pediatric area are huge with a pull out couch for parents. The PICU is still under renovation so the rooms are still very small without much room for a parent's bed. For this reason there are Ronald McDonald house rooms on the same floor. This allows me to stay on the same floor as Ronan but have my own private room and a real bed. They also give free breakfast every morning.
Tomorrow Ronan will most likely go to a regular pediatric room. His problem today was they wanted to keep an eye on his sugar level once he started eating ok. So far his levels have been good but he's refusing to eat but drinks ok. I explained to them that his medication is an appetite suppressant but we'll have to see how he does from here since he has to be eating to go home.
The other kids heard how much Ronan loved the Christmas tree at the hospital and they insisted we have our tree up and decorated before he came home on Friday. On Thursday night with help from Grandma they set it up and decorated it.
Inara even had fun and it was her very first time decorating the Christmas tree. She thought it was just as fun to take ornaments off as it was to put them on.
She was fond of the bulbs and became frustrated when the older kids kept taking them away from her to put back on the tree. I finally talked them into letting her hold onto a red one and she seemed happy with that compromise.
There was plenty of laughter and a few mishaps. The tree even toppled over at one point but was rescued by Grandma who engineered a way to keep it upright.
Watching Inara decorate the tree made me think about how this will be the first Christmas she will really be able to enjoy. I'm looking forward to seeing her open her presents as she has an immense enthusiasm for life and all its elements.
I also enjoyed seeing Xander's tinsel dance and Jadzia's Drummer "girl" rendition. Landon took charge and tried to arrange the ornaments in the best possible way, a job he has determined is the obligation of the eldest child.
They accomplished their goal and the tree was beautiful for Ronan's arrival. Ronan appreciated their effort and enthusiastically clapped and laughed upon first seeing the tree lit up. Inara did a little happy dance when she saw Ronan's reaction it was almost as if she too had been hoping the tree would make Ronan happy. I wish now I'd captured that moment on film but such is life.
The kids further enjoyed the Christmas festivities by building a gingerbread house which met its demise in a sudden unfixable collapse. Fortunately the collapse was met with roaring laughter and not tears of disappointment.
It's hard to believe Christmas 2011 is about to be upon us.
I had to add Xander lost his second tooth yesterday. With his tooth fairy money he got two things: A spiderman umbrella and fake abominable snowman teeth. You have to know Xander to realize how absolutely awesome abominable snowman teeth are. He has been calling them his dentures all day. The boy loses two teeth and sees dentures as a necessity.
Ronan is a completely new boy and it kind of makes me sad. He no longer wants to eat. His body tells him he doesn't need to because of the medication he is on. We are greatly struggling with this now that he is home. He went home Friday afternoon after I was given several tutorials on how to care for him. He has two emergency injections. One is for adrenal insufficiency and the other is for his hyperinsulinism (hyerinsulinemia/hyperammonemia syndrome). The results from the blood test to confirm this diagnosis are still pending and I am told it will take weeks for them to come back. They were supposed to be sent out Monday but someone made a mistake and they had to re-draw the blood and send them out on Wednesday instead. This isn't a huge deal since he had a PICC line there was no pain from either draw and if it will take weeks I figure what is two days.
In the mean time I am just trying to keep Ronan functioning and honestly at this point it doesn't matter what his diagnosis is I am more concerned with him eating and overall keeping him stable. We left with nine prescriptions to fill and a long list of dos and don'ts. I turned all of them over to the pharmacist and her expression resembled the overwhelming sensation I'd been feeling. I told her they could take their time and just give me a time to come back as I had to have them that night.
I gave them an hour past what she said and they had all but two ready. One was because it had to be ordered (but wasn't essential at this moment) and the other was rejected because it is too rare and needs special permission. It was one of his emergency shots but the less important one so I think we'll be ok. The important shot was the glucagon to give him if his sugar level is below 50 and he is having a seizure, unconscious or it won't come up on its own. We ended up coming back for that one. Isaac and I went to dinner while we waited and when we got back to the car I realized they had not given me his Diazoxide. The diazoxide is his medication that keeps his body from producing too much insulin and he has to have it. After calling the pharmacy they told me no script for that medication had been giving. I called the hospital and they called it into the pharmacy.
The problem then arose that it was such a rare medication that the pharmacy has to get a block lifted to even order it but this couldn't be started until Monday and Ronan had to have it right away. The pharmacist was awesome. She called around until she found one store that had the block lifted because they had one other patient on it. That store could give us a small bottle that would get us by until more could be ordered.
Since arriving home it has been an intense struggle to get Ronan to eat or drink. He is barely eating and his drinking is even worse. If this struggle continues he may end up back in the hospital. I thought we would be there today after he had a low blood sugar level and refused to drink or eat. It came down to getting him to drink with a syringe until he got enough to get his sugar up. He wasn't happy but it did the trick.
I'm really not sure what is going to happen at this point as Ronan seems to eat and drink less everyday. I plan on calling his Endocrinologist in the morning and let her know that eating and drinking are not going well. He is supposed to have surgery on Wednesday to finally fix his esophagus but I'm not sure it will happen with all his other issues still not completely taken care of. We'll just have to see how it goes.
