Monday, August 22, 2011

Harry Party and the Big Umbrella

Hi Friends!

I know you are tuning in to read part three so I won't delay...

(Oops. I wrote that several days ago and then I did not finish. So after much delay, I will continue...)

We went to Grandma Constance's house after they discharged us on Saturday (8/13/11). If you remember, it was Timmy's daddy's birthday the day before, and since they had to put Timmy on oxygen, we did not think it would be a good idea to light birthday candles in the hospital. We came home from the hospital just in time for a birthday party! Since Timmy's mommy's birthday is later in August, we decided to celebrate two birthdays at the same time. Timmy got to spend time with two aunts, two grandmas, two grandpas, two cousins, and two parents. For awhile, it seemed like Noah's ark!

One of Timmy's favorite parts of his entire visit to Ohio was spending time with his cousins. He loved playing with them, and you could tell that he really wanted to run off after them. We are so happy that Timmy has cousins that he can play with! Timmy's cousins even put up with hair-pulling and nose smashing and all of the other fun games that Timmy likes to play.

After a few more rounds of smash the nose, we got out the cake.

This moose has never seen such a green cake before! In fact, we all walked around for the rest of the day with green teeth. (Well, all of us except for Timmy, because he cannot walk and his mean mommy and daddy would not give him any cake, not even through his g-tube.) But Timmy's cousins sure enjoyed the cake!

Instead of cake, Timmy got to drink water. (This sounds mean, but drinking ice water out of a cup is one of Timmy's favorite things to do, and his mommy and daddy do not give him water very often because milk is better for him.) We learned our lesson, though, when Timmy kept crumpling the cup and spilling water all over the place!

And then came what we were all waiting for--presents! Timmy's daddy got something he had been wanting for a long time--a giant umbrella! Now Timmy and his daddy can take long walks without Timmy turning into a lobster.

The next day we got back into the car and drove all the way back to Maryland. (But do not worry, friends, Timmy's exciting saga is not over yet. I still have more to tell you!)

Friday, August 19, 2011

The continuing saga, part II

Timmy and I have had a very exciting and busy week. We have been so busy that I will not be able to tell you all about it in one post, but I promise that eventually I will finish the story! (To give you a preview, in one week's time, Timmy and I have been in three hospitals in three different cities, we have visited two different ERs, we have been admitted overnight twice, and the only days in the last week that we have not been in a hospital were Sunday and Monday. It has been fun!)

So, to continue my story...On Friday, once Timmy was feeling up to it, we left Cincinnati to drive back to Columbus so that Timmy could see his grandparents and aunt. While Timmy is sleeping and while we are in the car, we keep Timmy hooked up to a little machine that tells us his heart rate and his oxygen saturation levels (sats). Timmy normally has sats around 98%. In the week or so leading up to Friday, Timmy's sats had been a little low (around 94), but not horrible. In the car he was a bit low--around 91 or 92. But it is not unusual for Timmy to be a little low when he comes out of anesthesia, so we were not worried. (First mistake!)

Timmy was very tired and he slept a lot Friday afternoon. When he was awake he was extremely lethargic and just wanted to cuddle. Normally he is a very active little boy who does not like to sit still for very long. But on Friday afternoon, Timmy was not even interested in waving me around and banging me on stuff--one of his favorite past-times. We kept a close eye on him, and by 5:30 or 6:00 we were starting to get worried. We could not get his sats above 88, and they would often drop below that. We called Cincinnati, and they told us to take him to the ER at Nationwide Children's in Columbus (where Timmy spent his first two and a half months). They called ahead and told Nationwide to put Timmy on oxygen when we arrived.

We got to the hospital around 7:00 and had a very frustrating experience. Nobody believed us that this was not normal for Timmy, and nobody agreed with us (and Cincinnati) that Timmy needed oxygen. Apparently they do not realize that mooses with purple antlers are experts in respiratory issues. The nurses and doctors in the ER were very nice, but we do not think that they see Timmys with trachs and G-tubes very often. At one point, Timmy's nurse asked me, "If I do need to give him oxygen, how do I do it? Does it go in through his trach?" That was when we knew that we were in trouble.

In all it took 2 hours and 40 minutes to put Timmy on oxygen and here's why: We had to wait a long time before we saw anybody (even though Timmy's chart clearly said he was there for "respiratory distress"). Then I had to tell the resident all of Timmy's medical history which took quite a while. Then the resident met alone with the doctor there and told him Timmy's whole medical history. Then the doctor came in and had to clarify quite a few details about Timmy's medical history with me and Timmy's parents. It all took quite a while and this moose was tap tap tapping his squeaky hoof quite a bit which didn't seem to move things along very well. Even then, the doctor wouldn't put Timmy on oxygen until Timmy had an x-ray of his chest which took a while for them to see the results. (During the x-ray, Timmy's sats dropped to 70 for several minutes, and they still insisted nothing was wrong.) Once the x-ray results were available, the doctor came in and told us that Timmy's x-ray was completely clear and he didn't see what the problem was (all the while, his pulse ox monitor was alarming every few minutes). We were all very frustrated when finally a familiar friendly face walked by our room. I quickly squeaked and Dr. R turned around and came in to say hi. We told him our frustrations while the resident was in the room and suddenly a few minutes later the doctor came in telling us that the same x-ray where Timmy's lungs were completely clear a half an hour ago somehow got all cloudy in the upper right hand part of Timmy's lungs (meaning at least a quarter of his lungs were not working to their full capacity).

Finally we got Timmy on oxygen at 9:40pm. It made an immediate difference, and Timmy was much more comfortable. A little while later, we had a suctioning crisis. The nurse needed a trach culture which requires basic suctioning skills. Soon, though, it was apparent that she had never suctioned anyone before. She put way more saline than necessary down Timmy's trach, stuck the suction catheter in two centimeters too far (and brought up blood), and then realized that she forgot to hook up the suction so all the saline that she put down, instead of suctioning it out of Timmy's trach, got shoved down even further into his airway. Timmy's sats plummeted, and Timmy's daddy scrambled around for our suction machine. He got Timmy suctioned out. Timmy's sats was really low for an hour or two after that (even on 40% oxygen) but eventually he bounced back. No harm done, and we learned a valuable lesson. :)

Around midnight or twelve-thirty, Timmy was admitted to the pulmonary ward. He and his daddy got to ride on a bed with wheels all the way upstairs.

As soon as we got upstairs, we noticed an immediate difference in the quality of care, though Timmy's mommy, daddy, and I were afraid to leave Timmy alone for even a minute. We are starting to learn that the best way to judge whether or not someone knows what they are talking about is to listen to the questions they ask. If they ask the right kinds of questions about Timmy, there is a good chance that this moose can trust them! (And this moose is currently very annoyed that he just used 3pl to refer to gender neutral 3sg, but he cannot figure out a way to reword the previous sentence.)

We spent the next couple of hours rehashing Timmy's entire history with the nurse, and then with the junior resident, and then with the senior resident, and the RT, and I am not sure who else. Finally, Timmy was settled and we could all go to bed at 2am (don't forget, we had been up since 4:15 that morning for Timmy's scope). There were certainly quite a few bags under my purple antlers!

The next morning Timmy got another x-ray and guess more cloudiness in his lungs! His sats looked better than they had in weeks! So the doctors decided that we were ok to leave the hospital.

(Watch for Part III of the continuing saga, where Timmy and I have some fun!)

Tuesday, August 16, 2011

Back to Cincinnati! (The saga, part 1)

Timmy and I went back to Cincinnati with Timmy's mommy and daddy last week. Timmy has been so excited about this trip, that he keeps insisting on wearing his Cincinnati Reds outfit.

We decided to leave on Wednesday night after Timmy's mommy got home from work, but because I did not have time to pack earlier, we did not end up leaving home until 10pm on Wednesday night! Timmy fell asleep watching his mommy and daddy pack. He slept in his mommy's arms all the way out to the car and did not even wake up when she put him in his carseat. He woke up several hours later and looked around with a very confused expression on his face. He could not figure out how he went to sleep in his crib and woke up somewhere in western Maryland!

(If you are very observant, you will notice that this picture was taken during the daytime, not at night. That is because we did not have a picture of our road trip to Cincinnati, so I have included a picture from a week or so earlier, that was taken right after Timmy's daddy got caught in a rainstorm.)

Timmy's mommy and daddy were worried that Timmy would be in the car too much over the weekend, so they decided that one of the trips needed to happen while Timmy was sleeping. So we drove all night long. Several times Timmy's mommy and daddy were so tired that they asked me to take over. This moose drove all through the night, without getting even a single speeding ticket! Around 6:00 am, we were about half an hour from Columbus, and we all decided that we just could not drive any more. Since Timmy did not offer to take over, we pulled over at a rest stop and snoozed for twenty minutes or so. That was just enough time to give this moose the extra boost that he needed to finish the drive to Columbus! On the way into town, we passed Timmy's Aunt Sara on her way to work. We honked very loud and she was very surprised to see us! She thought we were not coming until later! Then we had fun surprising Timmy's grandma before she left for work. Timmy loves being back in Ohio!

But this moose is beginning to ramble too much. The important thing is that we arrived in Columbus, and that afternoon we drove to Cincinnati. The next morning was Timmy's daddy's birthday and the day of Timmy's big scope! To celebrate, we got up around 4am and were at the hospital before 6:00. On the way, I told Timmy's mommy and daddy that I was glad that the scope was early in the morning, because that meant there would be no delays. Boy, was I wrong! One of the first things we found out when we got there was that all the ORs were on an hour delay.

But that was okay, because it gave this moose plenty of time to explain his concerns to Timmy's doctors. And once again, we were incredibly impressed with the amazingness of Cincinnati Children's. This moose told Timmy's ENT doctor that we were very concerned about Timmy's increased reflux (too much stomach acid could damage his cleft repair in his throat). Ten minutes later, the GI doctor that Timmy saw a long time ago walked into the room to give us advice! he stuck around for the scope, too, and he had lots of useful things to tell Timmy's mommy and daddy and me. We are excited about this, because we want Timmy to be able to drink and eat as much as he wants without worrying about vomiting.

I am sure that all of you are getting bored with my long story and just want to hear the results of the scope. Timmy's mommy and daddy and I were all very anxious, too. We were very concerned that Timmy's increased reflux had done some damage to his surgery site. But we were wrong! Timmy's surgery site still looks good. The rest of his airway does not look as good, though. It is still floppy and swollen and small and full of scar tissue. We also found out that parts of Timmy's airways are smaller than a normal, newborn baby. That is very confusing to us, because Timmy is huge! He weighs 17 pounds now, so we do not know why his airway is not growing with the rest of his body. Timmy's doctors want to see him back in two months (instead of waiting the normal three). They say that is because they are worried about Timmy, but I think it is just because they miss me. (My suspicions were confirmed when they said that they want to keep Timmy for multiple days of tests in October. I do not think Timmy really needs a chest CAT scan or another scope or an impedance test. I just think our friends in Cincinnati want to spend more time with us.)

After Timmy's scope, his mommy and daddy got to go and see him. They were expecting a completely out of control Timmy. But I had whispered to the anesthesiologists that maybe they should try adding Fetanyl to Timmy's drug cocktail. And it worked! Timmy's mommy and daddy found a very sleepy, but otherwise fairly normal Timmy.

After awhile, Timmy was recovered enough to stop needing oxygen, and we got to leave the PACU. Then came the best part-we got to visit our old home up in the NICU!! And we were so excited, because we got to get hugs and kisses from some of our favorite people in the whole, wide world. But we forgot to do one really important thing--take pictures! So this moose is very, very sad. Next time we visit, we will remember! (We also wish we could have taken a cake with us to celebrate Timmy's daddy's birthday, but there are silly rules in the NICU that say we are not allowed to have birthday cake there.)

Soon after we left the NICU, we got in the car to drive back to Columbus. I am going to end my story for now, but it is not over. Sometime soon I will tell you about the next part of the story. Just to give you a hint, Cincinnati Children's was not the last hospital we visited on Friday...

Tuesday, August 9, 2011

To our friends in Cincinnati

Happy ten month birthday to Timmy! It is a little late (we celebrated on time, but this moose forgot to post the pictures!). It is hard to believe that in two months, Timmy will be one year old!

The real reason I am writing is to tell you that Timmy and I (and Timmy's mommy and daddy) are coming to Cincinnati!! On Friday Timmy's doctors will make Timmy fall asleep so that they can look down the inside of his throat to make sure he is still as healthy as a moose. We wanted to ask our friends in Cincinnati if they still remember Timmy and me (who could forget us?). Do you want us to stop by Timmy's old home in the RCNIC to say hi? Timmy and I miss all of our friends, but we wanted to make sure that you have not found other mooses that you like better than me. This is what Timmy thinks of that idea:

We are very excited to come back and visit!

Before I sign off, Timmy wanted me to be sure and tell you about everything he is learning how to do. He can sit up now, all by himself:

And his newest trick is being able to support himself on his arms. If Timmy's mommy and daddy help him straighten his arms out and put them on the ground, he can stay like this for 20 or 30 seconds!

That is all this moose has time to tell you right now. It is time for me to help Timmy's mommy and daddy pack up all of Timmy's supplies for our big trip to Ohio!

Wednesday, August 3, 2011

A very bad moose

Once again, I am a very bad moose for forgetting to tell you all about my friend Timmy. But because this moose wants to go to bed tonight, I am going to leave you with a video, and I will tell you more about Timmy on another day.