Baltimore: Day 13 (July 30)

We had another good day today and in the afternoon Mimi, Great Grandma Jo and Aunt Cindy came down from New Jersey via Laurel, Montana, to visit and stay the night. We even were lucky enough to have Mimi stay the night with Robbie to give us a night off from the hospital.

We have been driving around Baltimore for two weeks now and we finally found a part of town that was exactly what we have been looking for the entire time. The crazy part was that we were a block away from this area multiple times and just never happened to turn that direction. But now that we found it we will save ourselves a lot of time and anxiety.

They are heading back to New Jersey tomorrow so we will grab brunch at a "Miss Shirley's", which was on the show "Diners, Drive-Ins and Dives" and is known for their breakfasts.

Robbie did start to get another fever later in the evening, so that is always concerning but the doctors said that we can anticipate getting quite a few fevers during our stay because of his body trying to adapt to all the changes going on inside. Hopefully he can shake this fever and get back to just resting comfortably.

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Baltimore: Day 12 (July 29)

Today was a day that we more of...good day. Really the only thing that happened was that Robbie was able to have his first real bowel movement and what that means, other than the fact that the smell made a nurse gag, is that he can now get the tube out of nose that is sucking stuff out of his stomach and then we can slowly start to get him eating. Right now he is on TPN, supplement, to get his nutrients but food is the best thing for that.

Tomorrow we will get some more visitors as Mimi is bring down Great Grandma Jo and Aunt Cindy Lou. They are in New Jersey visiting from Montana and are making the trip down to Baltimore and staying the night. As always, it is really nice to have visitors, as it just breaks up the day and the grind a little bit.

We are now officially done with one full week in the hospital and hopefully things will go as planned and we just have five more. As long as that sounds, we are looking at it the other way and really surprised how quick the first week went and we are one week closer to getting our little guy home and back to our lives, with no bladders on the outside.

Baltimore: Day 11 (July 28)

Robbie was able to break his fever today and had a really good day. The fever started to break this morning and really broke around lunch. He was pouring sweat and soaked through his neck roll, but got the temperature back to normal. He also received 150 mL of blood today which took his hemoglobin count from 7.0 to 10.2, which we found out is a good thing. He got some of his best sleep since we got here, just peacefully resting and breathing normally.

The doctors were talking about taking the tube out of his nose tomorrow, allowing him to breath even better. It is in right now to help get all the gunk out of his stomach. He did have a giant bowel movement yesterday but they still aren't hearing any bowel sounds, so they assumed it was stuff from before surgery. Once they hear bowel sounds and he starts dumping, then he can start to eat some food. He has to obviously start slow with Pedialite but will gradually move to more substantial foods. The concern we had was with his surgerynwe had in Cincinnati to repair his Imperferate Anus, would this surgery mess up his system and cause any problems. Doctors said that there won't be any problems because he will be on laxatives and won't have any problems doing his business.

We hope we have a lot more days like today and can't believe that a week ago at this time we were preparing for surgery. Surprisingly this first week has flown by, now just another five weeks or so to go.

Baltimore: Day 10 (July 27)

Today was a pretty hectic day as we tried to get rid of this fever that has been with us since yesterday. Robbie got the gamet of tests and exams to see if they could see what was causing the fever. It is normal for post-op patients to run a fever as their body tries to fight off all the things that just happened to it. Dr. Gearhart said that over the six weeks he will be fighting a fever on and off because of his body trying to heal itself. We got the temperature down from 102.9 to 101.2 in 24 hours. The next step is to now get a blood transfusion to help get Robbie's hemoglobin levels back to normal, which is around 12. Right now he is sitting between 7.0-7.5 and with the transfusion will get his number up to 9 or 10. He needs the higher blood levels so his body can heal itself. Dr. G made a good comparison for us to show the importnace of the blood, "If a little old lady falls and breaks her hip, she loses about two units of blood to try to heal itself. Robbie had his pelvis broken in four places, so yes, blood is neccesary." He has a way of stating things to get you to understand, we love it.

Robbie is doing really good though through all of this and keeps showing us how tough and strong he really is. I am so proud of him for just doing what he needs to do in order to get out of here and get back to his life of wagon rides, buggy rides, swings and dogs.

Baltimore: Day 9 ( July 26)

We thought we were going to have a great day today because of how still and calm Robbie was all day, but Saree swore that he had a fever and something wasn't right. As usual, she was right. What was a low-grade fever has turned into a 102.7 degree fever and made us really nervous. As I type this at 2:21 am, he is still very warm and not resting as comfortable as he should be. They have taken blood and urine samples along with a chest Xray. The reason for the fever could range from infections to pneumonia, we won't know until later tomorrow. He is such a little trooper, not moving much and being strong when they are drawing blood. We can onlyhope it goes down and we don't have to worry about something else.

Baltimore: Day 8 (July 25)

Today we got moved from the PICU down to the 6th floor and the IMC. The moved went smoothly but the transition to the new setting and the fact that we got behind on his meds made for four hours of trying to keep Robbie still and enjoy our little boy for awhile. He was pointing at everything in here, playing with his soother and talking to us with his perfect Italian accented "Mama" & "Dada". He was squirming too much for Dr. Gearhart's liking, so also for ours then. He finally settled down around 8:30 pm and we finally got to eat dinner, in shifts.

Saree stayed with him last night and despite the fact that we now have a pullout chair to sleep in still got minimal rest because we now have two roommates, and one of them decided to be up all night making noises. I am sure we will get used to the sounds and things will go better for sleeping.

Mimi goes home today so it will just be the two of us for a few days. She has been a huge help for us and will be missed while she is gone.

Baltimore: Day 7 ( July 24)

We had a pretty peaceful day here in the PICU, Robbie was fairly still and would calm down quickly if he did stir at all. There was some talk of us moving to the 6th floor, where we will be the remainder of our trip, but they want to keep us here for a bit. Robbie had some high glucose readings because of the steroid he was on to help his breathing. Because of the high glucose he had to get insulin to lower those levels, which did the trick. Now we are waiting to see how he is going to breath since they stopped the steroid. If he does well without it we will probably move in the next day or so. They took the dressings off his pin spots so we got to see what that looks like, which isn't for the weak stomach people.

Tonight he was moving quite a bit more because he is getting used to the medicines, so now is when the "cocktail" of drugs come into play. They have to keep changing things as he gets used to them so he stays still and sedated. The less he moves, the better the pelvis fuses and the quicker he heals. Based on the last 14 months I think we will have our hands full trying to sedate him because being still wasn't one of his stronger characteristics.

We had our first visitors today as Mimi's cousin Chris and his family came to visit. They live in a suburb of Baltimore and came down for lunch. It was great to meet them and get a mental break for awhile.

I hope that Robbie can have another peaceful night and continue getting the rest and recovery that he needs from the surgery.

Baltimore: Day 6 (July 23 @ 10:41 pm)

Robbie is sleeping very peacefully tonight when I left the hospital. Saree is going to stay with him tonight and will hopefully have a very quiet night. They were able to give him some Tylenol today and that got rid of a little fever that he had and it also really killed the pain he was in. Like a nurse told me, the narcotics really just put you to sleep and don't necessarily kill the pain, whereas Tylenol kills the pain and lets you get comfortable. We want to thank everyone for their thoughts and prayers and we will continue to send updates.

Baltimore: Day 6 (July 23)

We have had a pretty good day of rest after the marathon surgery yesterday. Robbie is sleeping for the most part but does have an occasional outburst of pain and discomfort. The nurses are staying on top of things and our nurse today is very knowledgeable. Last night was not too bad, he could just never get comfortable. That happens when your legs are weighted down and all you want to do is curl up.

Saree had the pleasure of taking a Praxis test today in 7-12 grade Principles of Learning & Teaching. She now has a sprained wrist from writing 12 essays about stuff you are supposed to learn in college but what we learned in a study book and on the job training. Other than that not much else going on. I have had requests for a mailing address so here is our information at the RMH:
635 West Lexington
Room 206
Baltimore, MD 21201

Baltimore: Day 5 (July 22 @ 7:46 pm)

Robbie is in the PICU right now and resting from a very long 10 hours of surgery and anesthesia. Dr. Gearhart and Dr. Sponseller were both very pleased with how things went, saying that the osteotomy (pelvis correction) went as well as possible, with the bones melting together like butter. It was a very long day in the Waiting Room, but nothing like what Robbie had to go through.

The hardest thing to do now is keeping Robbie as still as possible so the bones can fuse together properly. They have his legs taped together to help the bones heal and of course have the fixator around his pelvis to screw the bones into place. As active as he is, these next six weeks are going to be a real test for him and us. He is obviously now very heavily sedated and will need to be that way for the duration of his stay.

We are very blessed that we were able to have this surgery and very blessed with all the support that we received so far from everyone. It really helps to know that our little guy is so loved. We will make sure that the blog is updated daily, since we have plenty of time on our hands to do so.

Baltimore: Day 5 (July 22 @ 2:03 pm)

Robbie is still in surgery and it is going to be at least another 3 hours or so. He is doing great and has had the osteotomy done and now Dr. Gearhart is working on his bladder. This is the long part of the surgery because he has to completely put it together and make it fit just right. Surprisingly the day has gone fairly quick and we are just hoping that the doctors and nurses stay sharp and alert and get our little boy put back together.

We will update the blog againg tonight after he is out of surgery and in the PICU.

Baltimore: Day 4 (July 21)

Laying Robbie down to bed tonight was rough, knowing that this will be the last night for 6-8 weeks that we can hold him and give him hugs and kisses good night. We were selfish and kept him way past his bedtime just to hold him and love on him as much as we could. We are now less than 10 hours away from the surgery that we have been hoping for and dreading since we figured out how to fix the bladder being exposed. We know that we are in the best place in the world to have this procedure done and that with all the love and support for Robbie all around the world that everything will be just fine.

We spent the last day before surgery today scouring the city once again. Saree has the pleasure of taking a Praxis test on Saturday morning to satisfy her requirements for certification, so we found where she is going to be taking it at Johns Hopkins University. On our "Goose Chase" we found Charm City Cakes by accident and on our way back from Target, found another part of Baltimore that we probably will try to avoid in the future. Today, we also got the ridiculous hot weather that the midwest has been getting so the second you walked outside you were soaked.

Mimi made the trip down from New Jersey today and we went to the Inner Harbor for our last non-hospital meal in 6 weeks. We ate at a great restaurant right on the harbor called "Phillips". I would recommend this place if you come to Baltimore. As someone that has never had a crab cake before, I am sure that any that I have from now on will not match the ones we had tonight.

Robbie has been such a good little boy this trip so far, despite that fact that he has two molars coming in, multiple hospital visits, rides in the car through some of the rougher parts of town and having to sleep in a pack-n-play in the same room as us.

For the surgery I will keep everyone posted on how things are going via Facebook mostly and then updating the blog as much as possible. I can update from Facebook on my phone so it is much easier to do it that way. We thank everyone for all their support and please keep the prayers and thoughts coming for Robbie during the surgery and recovery.

Baltimore: Day 3 (July 20)

We had a very good day on Wednesday, starting with Robbie sleeping pretty good despite our tight quarters here. We then headed to see Dr. Gearhart at 9:30 a.m., but just missed him because he had a surgery, so we waited around the hospital for about 45 minutes until he could see us. Once he did see us is where the really good day started, he said the rash was gone enough for him to operate. We will have the surgery on Friday morning at 7:30 a.m. (just 3 days later than planned). Now our job is to keep the diaper rash away until surgery time. Once the surgery is over, Dr. Cohen (dermatologist) will add an anti-fungal IV to Robbie, so the rash doesn't flare up.

Once we got the good news from Dr. G, we grabbed some lunch and then headed to the National Aquarium. The RMH has passes for the house members and we really enjoyed going down there. Robbie loved the fish tanks where he could get his nose right on the glass and really see the fish. He was probably a little too young to really enjoy it, but had fun anyway.

The adventure of the day started after dinner last night though. A group came in and made a giant spread of food that was delicious. Everyone ate a lot and enjoyed dinner, but about 2 hours later people were getting sick from something they ate and they actually took 9 people to the hospital for food poisoning last night. Right after Saree told me about this we both suddenly didn't feel good and thought we were going to get sick. That just tells us how powerful your mind is because neither of us were sick and probably didn't even eat the food that got people sick.

Thursday is going to be a day where we just try to relax and maybe go drive to see the ocean or something, nothing too exciting.

Pictures From New Jersey Trip

Here are some pictures from our little vacation in New Jersey. While we were there we went to State College, PA to see where Justin, Stacee, Kyler and Hudson were for the summer. Justin is a pitching coach for the State College Spikes, the Class A Short Season team for the Pittsburgh Pirates. Those pictures on the previous blog.

Then we went to Staten Island, NY for one of Justin's games and were able to take the Staten Island Ferry across to Manhattan. On the way passing by the State of Liberty. In Manhattan we just hung out at Battery Park and ate some dinner before heading back across on the ferry.

Other than those trips we just hung out at Mimi's and Uncle Jer & Aunt Mel's house, playing with cousins.

Baltimore: Day 2 (July 19)

Since our wake up call wasn't near as early because of no surgery, Robbie was able to sleep until about 8:00 this morning. We were told that Dr. Gearhart would get in touch with us around noon, so we just hung around the Ronald McDonald House (RMH) all morning. About 11:30 Dr. Gearhart called and gave us great news, we go to see him tomorrow at 9:30 a.m. for him to check Robbie's diaper rash. If the rash is better, and it has looked a lot better today, he can get us in for surgery on Friday this week. We were blown away that he was able to make this happen so soon and now just have to pray that the rash has subsided enough for him to okay the surgery.

After we got that good news we decided to venture out in Baltimore and find a Target and a place to eat lunch. We found a spot about 10 miles away from us and had a nice meal. On the way back to the RMH Robbie fell asleep so we decided to drive around so he could get a nap in for the day. Our drive took us down a Highway 40 West from downtown Baltimore. If you are ever in the Baltimore and want to see the sights DO NOT go down Highway 40 West from downtown. I have driven in some areas where I have been uncomfortable before when I was recruiting, but this one took the cake. Let me just say that we felt like the Griswold's in East St. Louis asking for directions for the interstate. If our windows weren't already up I would have used Clark Griswold's line, "Roll'em up" after he hears the gun shot. After our little outing we got caught in one of the heaviest downpours of rain I have seen in a long time. Even when we were stopped at a light, you still couldn't hardly see the car just in front of you.

Our evening was a lot more peaceful, we just had dinner here at the RMH and got Robbie a bath and laid him down early because he was so tired. Tomorrow will be a big day in how our trip goes and we just really hope that the rash is dried up enough for the surgery to happen so we don't have to have the surgery once school starts and we miss any more days than we already will.

Surgery Delayed

We got some very disheartening news today after seeing Dr. Sponseller for our Xray. Because Robbie has a diaper rash he want Dr. Gearhart to look at him to see if this would be an issue. After a 10 minute walk across campus and a 45 minute wait to see Dr. G he took about 10 seconds to say no on surgery because of the high risk of infection. Where they make the incisions is right where the diaper rash is located. We now have to wait and see how quickly the rash can clear up and if a miracle can happen and we can get a full day of Operating Room time here very soon. We were lucky in a sense today because the head of Dermatolgy happened to be there and look at Robbie himself, Dr. Cohen. Just like everyother doctor we have met here, he was a great person. We will know more tomorrow after noon and will keep everyone updated.