Day Six, We are out of the mix

Well we have made it home. Thanks to everyone for all your prayers and words of support. The doctors came by this morning and said that we were cleared to go home. They stopped his antibiotic and checked all his sutures. They said that everything looks really good. The swelling should subside by the 10th day and all the stitches will dissolve. During the night last night The Gopher pulled off the cast that was on his nose. The doctor said that it looked fine and didn't need anything to cover the stitches. They said that if he bothers it we can put a band-aid over it. His nose looks very different. It went from big and bulbous to small with a little hump at the top. He will probably need another surgery later in life to make it look prettier, but for now he will look fine. He has been a little grumpy (but who wouldn't be after having your head cut open), but we had a few faint smiles when he got to play with his toys here at home. The neurosurgeon said that he can resume normal activities within a few days, but I think we will be a little more cautious. He will get lots of pampering and special treatment. We decided that he needs a t-shirt that says "I had brain surgery and all I got was a hole in my head and this lousy t-shirt." Hopefully as the next few days go by he will continue to be more comfortable. Especially now that nurses aren't checking his vitals every few hours. In the next couple of days I will post some pictures of his new nose and his baseball-like incision (once the redness and puffiness go down a little). Thanks again to everyone and we really appreciate all of you so much.

Day Five, we will survive

Well today has been a very good day. Very early this morning the nurse took out one of the Gopher's IV's. And late this evening they removed all his monitors except for his pulse ox. So we are certainly moving up. He had a very good day. The swelling in his right eye has really gone down, and he can now open both eyes almost completely. He is much more awake and even spending a little time playing with toys. He is staying awake longer and eating more. He moved up from baby food to chopped up real food. His incision is looking really good. He has one small spot on the left size that is oozing a little. So the neurosurgeon came by and replaced his Steri-strips. They wanted to keep him today since he is still on IV antibiotics from the ICU for his chest congestion. It looks like we might get to go home tomorrow, but that all depends on the doctors. The Bear and the Goose got to come up and visit today. I'm not sure what they think of the Gopher's new look, but they will get used to it as he heals. Hopefully tomorrow will be our last post from the hospital, but we will have to wait and see. Thanks for all your prayers and support.

Day Four out the PICU door

Well we finally made it out. The Gopher had a really good night last night and didn't need any pain medication all night. The neurosurgery team came by early this morning and checked his incision and swelling and wrote the orders to move him up to the floor. They took out his artery line and his Foley catheter. The ENT came by and said that he didn't need his "face shield" any more either. We spent the morning just waiting to get a room on the tenth floor. His neurosurgeon came by before we got moved up and said that he was doing really well. He is eating and drinking good, no longer needing any breathing help and managing his pain well. He said that it might be possible for him to go home tomorrow or Monday. It depends on how long he needs to be on the antibiotics they gave him for his chest congestion. Around 1:00pm we moved up to our apartment in the sky. It seems like a mansion after being cramped in our shared room in the PICU. He has been doing very well all day. His left eye is completely open and his right eye started opening this morning. All day long the swelling has been going down and his eye has been opening more and more. He has even been playing with his toys a little bit. We haven't seen a smile yet, but at least he is content. We will see how tomorrow goes, and who knows, we might even make it home. The power of prayer is certainly evident in the events of the last few days. We went from unsure complications to complete turnaround in less than 24 hours. Thank you all so much for your prayers and support. I thought you might like to see what the Gopher now looks like with out the bandages. I included a before picture that we took the night before surgery. You can certainly tell a difference in his nose.

BEFORE

AFTER

He has a really bad hair-do. It is kind of hard and crusty from the surgery and incision. But as you can see you can't really tell when you look at him head on. I have a close up of the incision, but Daddy didn't want me to include it. We decided that he looks like a baseball because the incision is wavy. He looks 100% better today and he is starting to look like himself again. With a good head wash and a comb over no one will even be able to tell.

Day Three we wait and see

We thought that you might like to see what the Gopher looks like through all of this. Here is a picture of him will all his wires and his "face shield".

Here is a close up of his face. Be warned that he doesn't look much like himself. Nana said that if he were in a baby line-up she wouldn't be able to pick him out. The only thing that looks the same is his mouth. Everything else is just really swollen. But you can tell that his nose is so much smaller.


Day Three was much better than day two. We got a great night's sleep at the Ronald McDonald House and what a difference that makes. The Gopher was doing well in the morning. When we got there, the neurosurgery team was taking the bandages off his head. We didn't really want to see what his incision looked like. We had visions of Frankenstein will a giant puffy cut across his head. But when we looked, we were very surprised. On his right side you could hardly even see the incision. We thought they would shave his head at least to the middle, but they barely cut a strip. He still had hair in the front (kind of like Daddy's) and a bunch in the back (way more than Daddy). His swelling had gone down a little and was starting to open his left eye a teeny-tiny bit. They said that we could start feeding him some liquids, so we started with Pedialyte. He really liked that. I think his throat hurt from the tube and I'm sure his tummy hurt from no food in three days. After the juice and a good burp, the nurse decided to try cleaning him up a little. He had a lot of dried blood in his hair and ears. Since she only had one patient, she had time. So while we went to breakfast she cleaned him up a little. He took a great nap now that his tummy was full. He also started pooping and peeing more. They decided to take him off his IV fluids since he was drinking well. We spent the day watching his eye open a little more and actually get to see us for the first time in three days. He was a lot more active, kicking and moving his arms. He had a face shield with humidified room air that we call his dog collar (like the ones they use to keep them from scratching). It helped him keep his hands away from his nose too. The neurosurgeon came by and decided that he needed to spend one more night in the ICU just for observation. We got spoiled with our own nurse. In the ICU they have one nurse for every two patients. But Thursday night our roommate left and they didn't bring in anyone new. Friday evening they brought in a new patient, but for some reason he got his own nurse too. So the Gopher got one-on-one treatment for almost two days. He did really well all day drinking and even got a few jars of baby food. He made it through the whole day with only one dose of morphine in the early morning. We are so thankful for all your prayers. They are certainly working as he is doing so much better. Sorry that I didn't get to post yesterday. We didn't have internet access last night so I couldn't post anything. I will update for today, later this evening.

Day Two, almost through

Well the end of the day has come and it certainly ended better than it started. After I posted this morning, we went back to the PICU a little refreshed, thanks to a shower and food. We met with the neurosurgeons, neurology, ENT, and the critical care doctors. They all felt that his seizure was probably caused by his respiratory distress. They continued the seizure maintenance medication, the antibiotics, steroids, and anti-inflammatory medications. He had three IV pumps all going at the same time. He had been having trouble with his arterial line (used to measure blood pressure and draw blood when needed.) They were finally able to get it positioned correctly so that the alarms would stop. The ENT came by and cleaned out his nose so that he could breathe more freely. After that he made a quick turnaround. They were able to take him off the oxygen and just have him on humidified room air. His oxygen saturation is staying at close to 100 percent and his respiratory rate is back to a more relaxed pace. He had a fever earlier today, but that is normal for up to 24 hours after surgery. They gave him a dose of Tylenol and another dose of morphine and he slept for a while. His fever is gone and his temperature is normal. He hasn't had any pain medication since that dose around lunch time. He is more awake and moving his arms and legs. We think that he is frustrated because he can't open his eyes. He is still very swollen and the neurosurgeon said that it will probably peak tomorrow and then start to go down. They are going to remove the dressing around his head and check his incision. They will leave the bandages off and let it air out. We are not too excited about seeing it, but we will manage. If he continues to do well through the night and tomorrow morning, he will move off the PICU up to a room. From there it will just depend on how he does, as to when he comes home. The doctor wants him tolerating solid foods, pain managed by Tylenol, and breathing normally. We will keep you posted and thanks for all the calls and prayers. They were certainly needed today and they seem to have been answered as he is doing so much better.

Day Two, we will make it through

Day two did not start out to good. After I posted last night, we went to sleep. Around 2:30 am the phone rang. The nurse said that the Gopher had had a seizure and they thought we should come back to the hospital. The doctor asked me a few questions and then we got up, changed and headed over. It was an eerie feeling walking down Fannin with absolutely no cars. Not even an ambulance or people walking around. We made it up to his room and the nurse described the events that led up to the seizure. He had had some trouble breathing so they suctioned out his throat and placed a face shield with oxygen in front of him. He did a little better, but continued to have low oxygen levels. So they suctioned again and gave him a breathing treatment. That helped a little, but he continued to have labored breathing. At around 2:15 am he started having a very mild seizure that only lasted about 2 minutes. They gave him medication to stop the seizure and also gave him steroids to help open up his throat (which might be swollen from the breathing tube used during surgery.) At 4:00am they decided to do a CT scan of his brain to check for possible bleeding. It was quite an event to get all his wires and monitors and equipment on the bed to move him. It is a good thing he is a small boy or there wouldn't have been room for him. The CT went fine and the results showed that there was no bleeding, but he did have a little air in there (so now he is an air-head). The neurosurgeons said that this is very normal after surgery and the air will dissipate on its own. They decided to put him on maintenance medication for the seizure for at least a few days and if everything goes well they will take him off of it. We will speak with a neurologist later this morning about that. He has been very sleepy from all the different medications and that is not helping his breathing. The breathing treatments have helped a lot and they took a chest x-ray this morning. It showed a little fluid in his lungs, so they changed his antibiotics to help prevent pneumonia. They are also going to clean out his nose a little and give him some saline spray and ointment to try and help him breath a little better through his nose. Right now he will stay in the ICU until his breathing improves and they can take him off the oxygen. We are doing the best we can on very little sleep and the doctors and nurses have been super. They have been explaining everything and we are able to stay in the room with him 24/7 if we need to. We took a break at 9:00am to shower, check-out of our hotel and write this. Tonight we are hoping to stay in the Ronald McDonald house that is in the hospital. It is only one floor up from where he is, so we will be closer if he has any more problems. Thanks again for all your support and we will keep you posted.

Day one is almost done

Well the day started at 4:30 am this morning when we had to head to the hospital for the Gopher's surgery. They took him back at around 8:30am, but didn't start until 9:30am. The neurosurgeon went first and we spent several agonizing hours waiting for him to finish (we had thought that his would be the shorter portion of the surgery.) After four long hours, he finished and the ENT started (that was at 2:00pm). Finally at 4:45pm, the ENT came out and talked with us. She said that they were able to completely remove the cyst and the tract connecting it to the brain. He had lots of extra skin on his new nose, so she added a few stitches to make it look nicer. She called it the 10 foot rule (they should look good from at least 10 feet away). Right now he wouldn't pass, but hopefully later he will. She said that he will have trouble breathing through his nose for awhile, but after it heals a little he will be better. She said at that time the neurosurgeon was closing up and would be out in an hour or so. At around 5:30 pm the neurosurgeon came out. He described his portion of the surgery. He said that it took longer than he expected because the tract went further in than he had originally thought. It took a long time for him to close up the hole and then put everything back together (like Humpty Dumpty). He said that we should expect him to not look to good for the first few days. (He wasn't kidding.) We had to wait another two hours until we were able to see him in the recovery room. Once we did see him, it was a little hard to take. His nose was much smaller, even with the bandages we could tell that there was a big (now little) difference. His head was completely wrapped in bandages (like a stocking cap) and on the side by his ear you can see part of the sutures. His eyes are swollen shut and he is not a happy camper. He has a hard time breathing through his nose (as to be expected) so they have oxygen blowing by him. He has tubes coming out of everywhere (and I mean everywhere) except his right hand. He was very unhappy when we got there so they gave him some morphine (I'd want drugs too if someone cut my head open). Finally Daddy got to hold him and that really helped calm him down. He was fine until they had to put him back in the bed for the transfer to the pediatric ICU. Once we got to the ICU it was like all hands on deck. He had 6 nurses plugging and unplugging and checking and flushing. Once they got him all connected (I think he is wired for internet now), Daddy was able to hold him again. He was fine for awhile, until the nurse cleaned the drainage from his nose. Then nothing made him comfortable. So we put him back in his bed with some music playing and he finally settled down. We decided that it was a good time for us to leave and try and get some sleep. It was hard leaving him, but he needs his rest and so do we. It has been a very long day and tomorrow will probably be another one. He is supposed to only be in the ICU for 24 hours, but that depends on how his breathing and pain management go. We will keep you posted and thanks to everyone for all the prayers and well wishes. We certainly needed them and felt them today.

The Dancing Queen and the Holy Queen

The first Sunday in May, the Bear had her first Communion. She looked as pretty as a princess, or a bride as she said. The dress was borrowed from a friend, but she didn't just like it, she loved it. The veil was my wedding veil. She wore her sister's "high-heeled" shoes and a necklace from her Uncle Robbie and Aunt Judy. Daddy had a sad moment before Mass, as he looked down and realized that the next time he will be standing next to her in a white dress and veil will be her wedding day. She did a great job and remembered how to hold her hands and what to say. I can't believe how grown-up she is getting.

She and her cousin had a great time at their party afterwards. They got to cut their cakes and open presents, and I think they both enjoyed being the center of attention for the day.

The Goose had her second dance recital at the end of April. For her tap class they were pink poodles and danced to "Who let the dogs out". They stole the show. They were so cute and in the bottom picture, she is the poodle on the right. They had to stick out their tongues and wag their tales. The Goose is certainly a dancing queen. She goes from shy and quiet to smiling and putting on a show as soon as she is out on that stage in front of the audience. She is certainly a natural when it comes to dancing.