Jennifer's 7'4" Baby

This story has nothing to do with Hyrum, but more the introduction to my next baby that came 7 1/2 foot long. This story will also explain how I came up with the name of the blog.

6/7/2008

Well, John got me good. Our living room is no longer! There is now a beautiful black beauty that currently takes up 90% of our front room!

Before Hyrum went into the hospital, we were looking at pianos. We decided to stop looking as the day for surgery approached and the stress of looking became unbearable even though I had found a piano beyond words, we had decided to pass on it anyway.

John knowing that I already loved this piano and found that the chances of coming across anything similar were slim to none, and with a buyer flying in from Texas on Wednesday took it upon himself to work with the dealer and make all the arrangements. The piano movers left the house about the time I left the hospital to come home. Talk about him cutting it close!
I had NO knowledge of anything that John had been doing all week long. So when I arrived home...I was VERY shocked!!! I cried for about 10 min. all the while the camcorder sitting on the table in the kitchen was recording. Later when I watched the recording I cried again! It was an extremely pleasant surprise.

So for those who don't know pianos, we bought a 7'4" Grotrian that was 20 years old. Pianos are broken down in classifications 1 through 4. With over 70% of the pianos in category 4, about 20% in category 3, about 9% in category 2 and about 1% in category 1.

Category 1 has the likes of Steinway & Sons New York at the bottom of the category 1, Bossendorf somewhere near the top with Grotrian in between. Yeah, a piano that is better than a Steinway & Sons New York! Cool!!!

Hyrum's Take Down Surgery #15

For what ever reason, I'm missing a surgery. So yes, I do know how to count, I'm just forgetting one. It was probably a radiology sedation back in September/Octoberish.

May 31, 2008

Just making sure that we are still on for Hyrum coming in on Sunday for his bowel clean out and for surgery on Monday. I usually get a phone call on Friday's when surgery is on Monday. I didn't completely expect a phone call as I will be admitting Hyrum on Sunday, but I just wanted to make sure we were all a "go". Hyrum is doing great...and is now crawling on his belly inchworm style across the room!

Here is a picture of Hyrum in his walker! His next favorite thing to do!

I am out of town at a meeting but I called to OR and he is on the schedule. Not sure why you did not get the confirmation. I guess you would need to come into the hospital abt 1PM so he can get started on his bowel prep. I am planning on laparoscoping him first. See you then-

Earl C. (Joe) Downey MD

May 1, 2008

This is to let you know that we have arrived. Hyrum has toys to play with and has adjusted (as much as you can) to life in the hospital. Hyrum's surgery is set for tomorrow (Monday) morning. I will keep you posted on how he is doing through out the week.

Sarah's baptism went great and we had an enjoyable time with those that came. The kids are all with Grandma this week. And both Grandma's are getting to take time with them, so that will be fun for the kids to start their summer out!

I would also like to thank those that have been/are/will be praying for us. It means a lot to us to know that we have so many people thinking about us and especially Hyrum at this time.

Hyrum is doing well tonight. We have been promised a rough night tonight. He has been on a clean-out stuff for a few hours. And his stool is very runny, they will now be doing enemas on him every hour or so until it starts coming clear. They also have to do enemas on his lower half of his intestines to make sure it has no mucus in it.

We just got done with the first installment. It wasn't too bad, and he didn't complain too much about it. He was poked 5 times before they got his IV in. His poor veins are so small that even the best of the best have a hard time getting an IV into him.

Well at midnight we get another round of the enemas and will continue until it runs clearly, then they leave him alone.

His surgery is planned for about 12:30 tomorrow afternoon.

May 2, 2008

Well, Hyrum is out of surgery. It has been a long day. He is now comfortable in his sleeping with a little blow by oxygen.

Yesterday, Hyrum received a tube from his nose to his stomach to fill him up with a laxative to clean out his bowels. They gave this to him over a 4 hour period. During this process, the IV team came in with their fancy equipment and finally got an IV in on the 5th try. He was mostly happy and content throughout the rest of the day. Last night at 11 pm, they started doing enemas on both ends of his intestines...through his stoma (where he has been stooling) and through his rectum. This process helps to give a final clean out of anything that might be left inside. They did this at 11 pm, 12 midnight, 6 am, and again at 10 am. He spent a few hours playing on the floor and then napped after the 10 am clean-out. After which we roamed the halls in a wagon, in arms, or (his favorite) daddy's shoulders.

Hyrum then went into Surgery around 2 pm. We made it back to the room by 5:30 pm. He is doing well, but fully maxed on pain meds....but he has not red lined it so that is even better. He desaturates a little, but this is normal for him after surgery.

Though the night is young, I know that most people are anxious to know how everything went.

Hyrum going for a wagon ride!!! LOVED IT!!!
Hyrum playing on the mat this morning about 8 am...notice how happy he is...at this point he had gone 21 hours of no food.
And the final picture is right after Hyrum's surgery. Notice his stomach. The large bandage is where his stoma and mucus fiscula where. The smaller bandage is where they scoped him to make sure everything was good inside of him before they closed him up!

Hyrum is such a trooper. He just amazes me with his attitude and his ability to deal with his life. Yesterday they put a NG tube down him to put the medication straight in his stomach (it is real nasty tasting and he had to drink a litter in four hours time). He hasn't eaten anything since yesterday at 11 am. And he has had 4 enemas so far. one at 11 pm, 12am, 6am and 10am. He will probably have at least one more series. His surgery is scheduled for 1pm, but they are already behind and it will be more like 2pm. But he has already gotten down on the mat to play with his toys, and gone for a wagon ride around the unit. He only complains when they "torture" him with the enemas and other than that he is happy and wants to play! After the enemas I have them wrap him in a warm blanket. This helps him to sleep for a while (which is what he is doing now). He is such a happy child, I don't think any of my other kids could stand to go through 1 day of his life. But it really affects them to watch him grow and still be able to laugh. Though they still fight, they have a new reverence for life and for each other.

Grandpa Burrell (Jennifer's Dad) came to visit and give Hyrum a hug.

This will be (hopefully) the last on his gut. They are closing up his intestines so that he can poop normal. Next Monday he will go in for an MRI of his throat to see why he is not able to swallow chunky foods. This may result in another surgery in the near future. In August, he goes in for another x-ray of his spine. They are watching it for worsening scoliosis. From there his next planned surgery won't be until he is about 5 years old on his ear.

He has a curvature of 36% in his spine so yes he has scoliosis. They are watching him to see how fast the curvature is changing or staying the same.

If he stools in the next 48 hours, we won't know who well he has control until he is ready to potty train. If he doesn't go, then he will be on the needing an enema to go side.

May 5, 2008

Grandpa Smith came to visit and give Hyrum a hug.

I am truly amazed by this little boy that has graced my home! This particular hospital stay has really been the best and easiest for him. They are already talking of sending him home later today!

HE HAS A POOPY DIAPER!!!!!!!!!

more details to follow!!!!!

Ok So I have one awesome story. As Hyrum was taking a ride in his wagon, he ended up running into a mass of people and news people. I was wanting to go through them to the piano on the other side of the crowd, but was stopped by someone from the hospital asking if Hyrum would like a stuffed animal. He had yet to smile(reason for heading to the piano), so I thought this toy might cheer him up. He loved the stuffed animal, but another gentleman from the NFL Blazers came and asked if it was OK to let Hyrum say hi to the mascot. I was skeptical that Hyrum would like this, but agreed to it. Hyrum loved the attention!!! And I looked up to find myself and Hyrum surrounded by the camera crew! They took about 2 hours of film of the mascot saying Hi to other children, but Hyrum seems to be the only one who made it to the news!

If the download doesn't work, here is the link to the news.
http://www.ksl.com/?nid=294&sid=3469394

Enjoy

So dear friends and family,

As I was changing Hyrum's diaper this afternoon, I had to do a double take as there in Hyrum's diaper was poop! I yelled for the nurse and got 5 nurses at my door! I turned and smiling said "I have a poopy diaper!" Laughing everybody went back to work, but very thrilled for Hyrum as this meant he got to go home! I was discharged within the hour! I have since changed about 5 diapers!

Hyrum was very excited to go home. When I showed him his clothes he laughed very giddy like and clapped his hands!

Yesterday, while talking with my mom, she relayed a story that I would like to share with you. Tuesday morning, Rachel (my 11 year old) refused to have breakfast. My mom found this to be very odd, but did not push her. Later on, Sarah spilled the beans and told Grandma that Rachel was fasting for Hyrum to get better. Now remember Tuesday, he was still on full pain medication all day long, he was not allowed to eat, but he slept for the full day with minimal wakings (only for more pain meds). Wednesday morning, it was a complete turn around. He was off oxygen completely, he wanted to sit up and play for a few minutes, he even went on a ride in the morning, though he was fairly tired through out the day. So as I relayed how well Hyrum was doing, my mother in turn told Rachel how well Hyrum as doing, to which Rachel responded, "Fasting does work and Heavenly Father does answer questions" What a wonderful experience for her to learn such an important lesson!

I think this is one of my favorite faces that Hyrum makes. The one eye brow raised, with that "Oh ya" expression!

Most baby's don't like riding in their car seats. I think all would agree that this is NOT one of those times. With that tongue sticking out it says it all "I'm going home!"

Sarah Got Baptized

Sarah Got Baptized May 31st. We went to a local park and took some nice pictures of Sarah. I made both dresses.

Rota Virus

Though it seems to be a repeat, I left the following email in it's entirety as I find other things that I'm missing. It also shows where I am at in my life at this point. Though it was hard on Hyrum, this was not one of my harder moments. The staff was excellent with Hyrum and took over a lot of his night care, this gave me more sleep than I had had since...well not necessarily before he was born, but pretty dang close. And of course, as it was on a "pull out chair/bed" it wasn't really all that great anyways.

March 20, 2008

Since my last update, we have added more friends and family to our email list. So I would like to start by just introducing Hyrum better for those that are getting this the first time. For those that know the whole story, can review or skip down to the bottom for the latest update!

Hyrum was born March 13, 2007. The pregnancy from the get go was about what we had expected. I have many various degrees of complications with each of my 3 other children, and this was no exception. We were grateful to a niece of mine that came to stay with us for about 2 months during the first stage of problems. She was a great help with our children, and stepping in where needed around the house. In November, at my 20 week appointment, it was discovered that our unborn child had some kind of mass in his abdomen. Because of how tiny he was at this time we did not know anything more. In December, while having an x-ray done with a specialist it was decided that this mass was in his intestines, but it was inconclusive what was causing the blockage. In January, we were transferred to a different specialist at University of Utah Hospital where it was decided that he may not have an actual anal hole, though it was difficult to tell because everything, including the anal dimple, was as it should be. In January, my mother started making the trek to help as little Hyrum was thinking he would like to come and meet his family 3 months too soon. She would go home Friday night to her house and come back to my house Sunday nights to help get kids off to school Monday morning. I was hospitalized about every 1-2 weeks for an overnighter to stop contractions.

He was finally allowed to come 2 weeks early on March 13th. Since this time, he has captured the hearts of every nurse, doctor, and "Grandma" that has come in contact with him. Even while taking him to the grocery store completely covered in his car seat, I get people that will stop me to ask and see my baby. Sometimes I wonder why it is they have to stop me, not the dozen other mom's in the grocery store with their baby's covered. But I have come to learn that his spirit draws people to him and his big brown eyes capture their hearts. Some have told me that looking into his eyes you wonder if he can see into your soul. He seems to know that he choose this life, and when I personally look at him, I believe that he choose our family to help him through those struggles.

He seems to not be able to take the easy way, he expects to experience it all. Hyrum has undergone, 11 surgeries with 14 procedures and red lined it 5 times due to overdose or bad reactions to pain medications. He has had enough x-rays, I think he could light up the sky with the contrast. He has been in to see various Dr.'s at least 40 times in the past year. He has had RSV once, Bronchitis at least twice, and a cold at least once a month since he was born.
At about 9 months, Hyrum quit growing or gaining weight. He has been the same 15-17 lbs since. After his last surgery, he actually started to gain weight. He finally broke the 18 lbs mark. Hyrum is now 13 months old. He is very calm and happy. He still does not sleep through the night (and in fact still gets up every 4-5 hours). Since his last surgery, he has decided he was done drinking breast milk and went cold turkey and has since been eating about 8-12 oz of baby food 4 times a day. He enjoys a good drink of water and will tolerate drinking the cold cow milk that is offered him. For his birthday he got a bouncer which he spends most of his time in. He has been working his leg muscles with his bouncing. He is rolling all over the floor to get to his toys, and has started to try to get onto all fours for crawling, but doesn't quite have the strength in his stomach to pull himself up.

Last week we saw the Plastic Surgeon, to find that there is nothing they can do for the odd shape of his head. But as he grows and sits up more and rolls more, it should slowly even itself out better. This coming week he sees the ENT, for a follow up of his Tonsils and Adenoids that were taken out six weeks ago. Then on to next week with a sleep study and the spine specialist (two different appointments). Hyrum had an x-ray done on his spine, to find that he has a 25-degree curvature. In two weeks he has another x-ray to make sure his urethra is healed and in three weeks we are hoping to have his colostomy closed and so that we get a poopy diaper instead! It is likely that he will come home from the hospital on Sarah's Birthday.

This past weekend, Hyrum woke up to a very runny colostomy bag (poop bag) and excessive throwing up. Another trip to the Dr's office and running more tests found that Hyrum has the Rotavirus. It lasts up to 10 days, with extreme runs and throwing up. We have been working to find the balance of feeding him Lactaid Milk mixed with Pedialyte in small enough amounts to help him keep it down without losing it. We have gone through more blankets and towels in this past 2 days than we usually do in a few weeks. He cries constantly for more food, but when we give in, he ends up losing it all over everything. He has lost the 2 pounds of weight that he gained and looks very skinny (not that he was chubby before) but his face is looking very thin.

This was today, the only time I could get him to smile.

We would like to thank those that have been around and helped or listened to us this past year. Sometimes it seems to have flown by and other times, it seems to be crawling by. We thank each one of you for your thoughts and prayers that you have sent our way. We know that it has been the combined efforts and prayers that have kept this little guy with us.

April 20, 2008, Email to Dr. Downey,

Just letting you know that it is affirmed, Hyrum has the rotavirus. He has a huge amount of stool coming out, but we were told to pay more attention to his output of urine and his input of drinking. We are trying to find the balance of giving him as much liquid as possible without having him lose his lunch at the same time. He is pretty miserable and thinking we are starving him to death. He has slept most of the day, and we hope he will sleep most of the night. I was told that he was contagious up to 12 days from the start. This puts us at May 1st. John and I are debating on whether we should cancel his three doctor appointments that are in this time frame.

Do you think this may affect our closing his stoma the middle of May?

April 22, 2008

I apologize for not keeping up with the emails but this weekend I was on call and it overflowed into yesterday. I hope he is ok. I will be down to Provo on Th and if he is still in the hospital I will drop by. I am not sure about the closure at this time. These rota infections are seriously bad news sometimes and we will just have to see. Getting diarrhea with a brand new GI tract through a colon that has never been used could be a really bad thing. They always have a serious butt rash anyway but the rota could make it bad. I will keep in touch. Sorry, I am so busy!

Earl C. (Joe) Downey MD

April 22, 2008, to Dr. Downey

I figured you were either really busy or out of town. We are up here at Primary's as Dr. Conner thought we would be turned away at every other hospital in Utah Valley with his colostomy issue. Hyrum has been doing much better today. (relative) He is eating tons better, once I showed him a jar of baby food, that is all he wants to eat. His stool is still very runny and he puts out an extreme amount. His potassium was high until today and his sodium has been really low and still is. But the nurses (most know him from previous visits) gave him a mat to play on the floor on and lots of musical toys(his favorite) and he seems to be even happier. I imagine we will be here until at least Thursday. Being his fever is gone and he is keeping food down it will depend on his stool output slowing down and thickening up.

I wondered if we may have to push back his surgery due to the virus. And in truth (except for the times his bag explodes due to too much fluid) it has been pretty easy to deal with the diarrhea being in the colostomy bag.

Here are a couple of pictures, one before and one after he got his toys!

April 21, 2008

Well, the Rotavirus has taken its toll on Hyrum. He was able to drink enough, but his body was not absorbing the fluid. Everything was going straight through. If he ate anything more solid than Lactose-free milk, it would come back up. After a very long night and an even worse morning. John and I decided to take Hyrum to the hospital. He has been hooked up to an IV since about 11 am. He has started to finally pee more than a tsp/hour, but it seems that he is still not absorbing anything as his stool output is off the charts. He is on medication to help him absorb his intake food better. He will remain in the hospital until he can tolerate solids again and get off of the IV.

Jennifer,

You did not need another round of hospital visits and certainly not under these circumstances. Sounds like Hyrum has hit some kind of brick wall in his recovery process and the virus has made that more apparent. I am sure you are not getting very much sleep these days - as if you were getting a lot of sleep before.

From Ted

To Ted:

Hyrum has definitely hit a brick wall. Two weeks ago he weighed in at 18 lbs. (record high) After two days of this virus, he has lost almost 3 lbs. Last night he was up every 20 minutes wanting to eat more. If I feed him too much in one setting he throws everything up, so I can only give him about 1/4 of what he is used to. And he isn't getting the concentration of food like he is used to, so between not enough food and feeling yucky, it was a very long night. To make matters worse, he ate more than I anticipated so I ran out of fluid about 3 am and had to run to the store for more (Thank goodness for 24-hour stores).

I slept for about 2 hours before I brought him to the hospital and got another hour in when they finally put us in our room for the night. Because I slept this morning, I ran out the door without eating making it a long day as I didn't get good food to eat until 4pm. As much as I don't care for granola bars, they can come in handy every once in a while.

Since being admitted, he has not thrown up. I have been very careful as to what he drinks. The IV's are helping, but his output in his colostomy is way beyond normal. So we get to hang out at the hospital, ignoring everything that I had hoped to do this next week and figuring out how to adjust various Dr. appointments to fit our new schedule.

But I guess the best part is, life keeps going! And I keep telling myself that this too shall pass...and I have been telling myself that for the past year...one day it will happen!

also feel that Hyrum is on borrowed time. The spirit around him is so strong that it is like being close to Heaven. I try not to think about that borrowed time, but try to enjoy every moment that I have with him, whether it be another day, week, month, year or years. It has been an honor to know, hold, and love him.

Whenever I think about the past year and look at individual experiences that he and even I have been through I am moved to tears. I was visiting with my mother on her anniversary a few weeks ago, and we were talking about Hyrum and some of his very close calls. She asked me what I thought about his struggles, and I told her (through tears) that I know Hyrum was meant to come to my family, and when the Lord is ready for him to come home, he will. I hope and I have faith that he will be here for a wonderful lifelong time, but back in November before he was born, when John and I first learned we would not have a "normal" child, we both put this child in the hands of our Lord to do as he needed. And I have those thoughts daily of how long I will get to keep my miracle baby and enjoy what I have!

April 22, 2008

Hyrum is doing SO much better today. Yesterday his potassium was high and his sodium level was low. Today only his sodium is still low. He woke up very happy this morning, so his nurse brought him some toys to play with and a mat to play on. As I was eating my breakfast he gave me the "where's my food" look and the lunch look was even deeper. So we gave him some baby food from a jar, and he begged for more. He has eaten really well today. His stool output is still on the very high end and this may put a cramp on our colostomy closer next month as it would not be good for him to be stooling through a new hole and have it be diarrhea. But time will tell.

We got visits from his Grandma and Aunt and brother and sisters. Karl got to spend a few hours with us and got on the floor to play with Hyrum. I think this was very therapeutic for both of them. Rachel and Sarah came and were very glad to see him looking very good.

I am semi-hopeful for coming home sometime the end of this week, but it will all depend on how well Hyrum does in the next few days.

Thanks to all for your words of encouragement and especially for your prayers!

Yes and just to get even with me, 10 minutes after I sent the email, he pucked it all back up:(...we will see what tomorrow brings!

April 23, 2008

Last night a Resident Doctor that works in the infant unit calculated how much stool Hyrum was putting out for his body weight and then figured it to herself if she were putting that much out compared to her body weight. Hyrum weighs in at about 16-17 lbs and is less than 30 inches long. This lady is roughly 5' tall and max weight would be 110 lbs. So if she were stooling the same amount for her body weight is that Hyrum did in the last 24 hours she would have put out 11 litters of stool. This gives you all an idea of about how much diarrhea Hyrum is having...LOTS!

Last night after I sent out the email, he pucked a good couple of times. This morning after eating a few times he again lost his lunch. Since then I have put him back to his Lactose-Free Milk as his pediatrician suggested he be on until this was over and he is allowed to drink Pedialyte.

He has slept for most of the day, I am hoping that it is his body's way of fighting this virus off.

Originally it was planned for Hyrum to have his closure surgery the middle of May. This virus will affect the Dr.'s decision about continuing as planned or postponing the surgery.

We had Karl for a few hours today while his Grandma ran errands and drove my sister Martha around to her various schooling appointments. Though I missed the picture of Karl playing with his cars under Hyrum's bed, I will not miss it again. But here is a picture of the two playing together.
As for the future, to get out of the hospital Hyrum will have to be off the IV, stooling thick (or normal) and eating normally without losing it a few hours later. The infant unit Dr. suggested this could take anywhere between 7-10 days. And that one day, it will be like a shut off valve had been switched and Hyrum will be back to normal and be fine.

April 24, 2008

Hyrum's Thursday was much better than Wednesday. He still had a minor throw up, but not much to worry over. His stool is starting to thicken up and instead of using syringes to remove the stool, we actually have to take the bag (not the disc) off and replace with a new bag because the stool is too thick to go through a syringe. His stool has also decreased in half from yesterday!

He has slept through most of today, and for the past few hours, wondering if I had actually allowed him to mess up his days and nights. (Yikes!) But he is settling down (Hooray!) for the night. He is eating more, drinking more, wanting to play more and be on the floor with toys surrounding him more.
Today we got another visit from Karl, and I made sure I got the picture of him playing under Hyrum's bed!
Hyrum even gave Grandma Burrell (my mom) the privilege of cuddling with him before he went down to the floor to play with his new toys provided by the hospital.

Tomorrow is another day, but we are continually praying for improvement with each day!

April 25, 2008

Today Hyrum's electrolytes were very close to normal. And his stool output was down 1/3 from yesterday. So they felt that he did not need an IV. Which means that I had no use for the hospital, as I was there for the IV and for hydration. So we came home today. Hyrum is doing much better, he is eating, he is drinking, he is laughing, and singing!

We had a cousin show up about 45 minutes before we got discharged and he happily carried Hyrum on his shoulders out to the van, while carrying a few bags in one of his hands, while I got the rest of my stuff and out the door we made it in minutes from the time I signed the discharge papers. I don't think I have ever been discharged so quickly before!!!

And of course, Rachel was the first to give him a hug, which he loved thoroughly! Least to say, everyone was happy to have us home!

Birthday present: Procedure #12 & 13 Home with a Foley again...

March 7, 2008

Hello Dr. Downey,
Just checking to see if Dr. Cartright is going to check Hyrum during his surgery, and also I haven't heard about his spine. Did you have a suggestion of who to see for this? Dr. Muntz did an x-ray on Hyrum's head. I guess he should have been in a helmet earlier in his life. I don't suppose you have talked to him about this? He was supposed to call and let me know what the result of the radiologist report was, but I haven't heard yet.

From Dr. Downey

Obviously, communication is not working too well here! I went to the urology office myself and saw Dr. Cartwright and the person who does his schedule. I thought this was being done. I actually think that these procedures are being scheduled for my room since nobody wants to use their time so I will check with Krissie/Monica about this (the T+A and cysto) Dr. John Smith is the back specialist at PCMC and I will ask to have a consult arranged for him with Dr. Smith. There should be no rush on this I think. I will likely see Dr. Muntz and will mention it to him.

To Dr. Downey

This is one of the reasons we bug you often. You are the only one I can get through to. Thank you for working hard to make sure everything is taken care of. If the procedures are scheduled for your room will you take a break while everything is being done, or will that change what you want to do, being you have control of the time? I know you didn't want to take too much of Dr. Muntz time with everything being done in his room. You are more than welcome to share my email with anybody else you would like me to bug. I really do appreciate the time you have spent in helping to put things together for Hyrum.

From Dr. Downey

I am still thinking about what we do if the urologists can not/do not get the fulguration done. I am thinking I might just fix it then. Likely this is the case. What is the dilator now?

To Dr. Downey

We are dilating every morning using the 13 mm. Overall he is pretty loose still with only doing it one time per day. Every once in a while, he will squeeze his muscles preventing me from getting in and out quickly, so I give him a tickle and distract him and he will loosen up for me! Both John and I trust your judgment completely and appreciate your interest in Hyrum and his well being!

Here is a picture of our concert pianist in the making. Keep us informed of what you decide to do.
Thanks for everything

Another quick thought. As I was sharing our emails with John, he was wondering if you are thinking of "hooking" Hyrum up? If you think Hyrum is ready, we are more than willing to allow that to happen sooner and continue dilating him for a few more months if needed. But as we have never dealt with this before, we will leave those decisions up to you.

From Dr. Downey

This is why I asked the question. It would depend on several things: the urologists do not feel they can approach this with the scope; I would remove the diverticulum and EVERYTHING was perfect; Hyrum is feeling well; his T+A went ok. I will check on where this is going tomorrow.

To Dr. Downey

I figured that was where you were heading with the question. Sounds like it may be a near last-minute decision is in the making....as for Hyrum's health, I don't want to jinx him...I will leave it at that. We will take it as it comes. Not that I don't want to get too far ahead of myself, but what is the recovery entail exactly for reconnecting him? I can't imagine it being a 24-hour recovery like the T +A will be, and all I know is what past surgeries have been like for him.

March 16, 2008

Well, the time has come and Hyrum is now 1 year old. He is trying very hard to learn to crawl. He knows he can, but usually ends up face first on the floor. He got a riding car from his Grandma Smith that plays music, he usually will sit next to it and do a jig with it.

We also got him a "jumperoo". It is like a bouncer that you would hang from a doorway, but it looks more like a walker. He loves being in this and will jump the entire time. Yesterday, he feels asleep in his jumperoo and when I moved him to his bed, he woke up and didn't fall asleep...oh well! Hyrum did not really like his birthday cake, after taking a bite, he turned his cake pan upside down and was done.

Karl has been a great big brother. Today he was playing with Hyrum and told Hyrum that "you are my best friend". He is speaking very clearly. This has been great and he has shown a huge improvement in his speech. He shows great love and kindness towards his brother and his sisters.

Sarah is growing by leaps and bounds. This past week she has decided that maybe swimming is not her nitch and will be finding something else to do with her time. She misses playing with her friends, as I won't let her play too often trying to protect Hryum's health.

Rachel is loving her swimming and will be joining the local swim team pretty soon. Her teacher is very impressed with how fast she learns and with her speed. She is growing into a very beautiful young lady.

Well, it is time for Hyrum's next surgery. It is planned for March 21...this coming Friday. The ENT will be taking out his adenoids and tonsils. Dr. Downey (his GI surgeon) was not wanting to plan too much time in the ENT's operating room, so he was only going to have the urologist check to see if a specific procedure was possible. This past week Dr. Downey realized that the surgeries were all planned for his operating room. This means that he can take as much time as he would like and not worry about the other doctors. So not only will the urologist (or he will) check, but will take care of the pouch that is on his urethra. If everything goes well and Hyrum continues in his good health and the surgery up to that point is going well, than..he will close up his colostomy!!! This means that his stay in the hospital went from an overnighter to at least a week to allow time for his intestines to heal and for Hyrum to eat and poop. We are very excited at this prospect as this will be the end of surgeries on his intestines, and we will move on to other issues, like his spine, head, neck, ear, and jaw, to name a few.

We may be looking for help next week, as Jennifer's mom is in Kentucky for the next few weeks...congratulations to Landen on his Baptism!! We have the girls in school from 8:00am to 2:15pm and Karl is in preschool Monday, Wednesday, and Friday from 9:45 am to 11:45 am. So if any of you would like to help, while Jennifer is in the hospital and John is at work, we would love any healthy volunteers.

March 16, 2008

Hi Dr. Downey,
We are looking forward to getting Hyrum's surgery over with. We will see you on Friday.

P.S. John was wondering when he might get the great picture you took of him and Hyrum in your Provo office?

From Dr. Downey

Thanks for the pictures! enclosed are the ones I took in the office. I was disappointed the one of Hyrum and his dad is a little out of focus. Sorry. The day before the surgery I would like for Hyrum to be on clear liquids only. Give him 1/2 cap of Miralax mixed in some juice 3 times the day before. It should clean him out well just in case we can close his stoma. The spine thing is not arranged yet I think and I will check on it. Thanks

Earl C. (Joe) Downey MD

To Dr. Downey

As for the clear liquids, I just want to clarify and make sure I understand. Starting the morning of Thursday, said during his 6 am or later feeding, give him clear liquids the entire day until we see you on Friday. In 3 of those clear liquid feedings spread throughout the day add 1/2 cap of Miralax.

I was going to call tomorrow and ask, do I need to bring Hyrum in on Thursday for a blood draw? We did this on his last surgery in Sept, but I had not heard yet if I needed to do this, this time also.

From Dr. Downey

yes, this is the clean out plan. Make sure he drinks a lot of fluids. Gatorade is good. No, he does not need any labs preop. We can get what we want in the OR or preop area if necessary since he is doing so well.

To Dr. Downey

How much is a lot? I will be giving him liquid in a cup as he won't drink anything but "his milk" out of a bottle. In past planned surgeries, I usually can't get him to drink more than an ounce or two of clear liquid. I hope that with the cup he will drink more. I can usually get him to drink about 2-3 ounces of water in a setting. He is getting better at that. I figure I will just have liquid available the entire time in hopes to give him all opportunity to get all he can.

I'm glad I don't need to come up for labs. My Thursday will be busy enough without having that one item to do.

From Dr. Downey

I knew you would ask me that. I don't know how much. If he has a lot of stool output which is the idea of a bowel prep, then he may get dehydrated. If he is urinating regularly and his urine is not dark, he is probably ok.

To Dr. Downey

Thanks for the good laugh. I'm not sure if that is a good sign if you know me that well. (hehe). Well, at least I know what to look for to make sure he is getting enough or loosing too much.

March 17, 2008

Jennifer,

Happy to see that Hyrum has made it to his first birthday. I look at his eyes and they are older than one year. He is more like Karl's age. Maybe why the two are friends at this point. Hyrum has impacted more than your family with his personality. Somehow some of the doctors are captivated by him also.

Sounds like that next little bit will take a lot of energy. A normal week of your life is hard enough and to have a week of the hospital on top of that - I will be thinking of your efforts this next couple of weeks.

I continue to think about our couple of chats. There are three young families in my life who have had difficulties with babies. There is one in St. Louis who lost their baby at about two or three days old because of a rare condition. There is a young woman engineer that I have worked with for a few years who was to have twins and lost both recently at about the sixth month of pregnancy. Then there is your struggle. It seems like we are reliving the late 1800s when losing children close to birth is common again.

Ted

March 17, 2008

Hello Ted,
I am sorry for those other families. My heart goes out to them. For as exhausted as I am, I don't think I could go through losing my little Hyrum. He seems to complete our family. After having our two girls fight and compete for everything, it was a nice surprise to have Karl show such love for his brother. He has teased Hyrum, but never outright mean. When Hyrum looks at you, he seems to see into your soul. I have had complete strangers in the store stop to see how beautiful he is and become captivated by his eyes. I think Dr. Downey's pictures are one of the first that catch those eyes. When Hyrum was first born and we were having so many problems, Dr. Downey would come to check on him and just amazed at how even then, Hyrum was seeing deep into his own eyes. There were a few times that I would come into Hyrum's room to find a nurse from a different part of the hospital that had helped with Hyrum for part of their job in his room just holding him. His wound care nurse was in his room the most often. And his speech therapist was in there the next. At first, they were embarrassed to be caught, but I would assure them that he was deserving of their love.

This next week, I am truly going to be running harder. I have to come up with babysitters for all of next week, get my house in order, and get my fridge mostly full. Some things are more important than other items, but we get done what we get done. Last week, I spent most of my time getting my girls Easter Dresses. My mother-in-law and I had bought fabric at $1.00 a yard months ago enough to make the six granddaughters each a dress. She was going to do some and I was going to do some. When I went looking for my pattern, I realized I had given it to her to borrow. When I came home, it was not just with the pattern, but her fabric for the other dresses. Luckily they were pretty easy, I got Rachel's and her cousin that is her age sewn in one day. The other four took three. Least to say, my week was spent in front of the sewing machine. But they turned out beautiful.

I also know many new moms and even seasoned mom's that struggle getting babies here to stay. I have a few ward members that are struggling, but I deal mostly with my sister. Her health is not quite up to par and she missed carried numerous times around the time I got pregnant with Hyrum. She finally realized that she wouldn't be able to care for a child, let alone give birth to one in her current condition. This realization came by watching me care for Hyrum. She has learned to enjoy her current state of life instead of dwelling on the wishes. She is working towards improving her health in the hopes of one day having that baby.

Life seems to throw curve balls to everybody, I don't think any of us are immune to them. I love the statement that I heard years ago that says we all walk the same path, the flowers are just different colors.

March 18, 2008

Jennifer,

Once in a while someone comes along that has a soul that is very different. Hyrum appears to have that. He is living a lot of life in a very short period of time. Somehow Karl understands that and so has found a deeper friend than what would happen to other children. Who knows how long that will last. The growing up process brings surprises along the way.

Hope you have a good week as you enter into the week of surgery. Hope you get some help during this next couple of weeks.

From Ted

March 19, 2008

To Ted

Yes, I think the two boys actually communicate on a deeper level than even I cannot imagine. I do not look forward to the day that it changes because I know that it must.

It was suggested to me that I talk to Hyrum about everything that is going to happen to him over the next few days, each day that we draw closer to "the day" he seems to grow calmer. Every once in a while he will shake his head as if he understands. I think his soul does understand.

John's father will be taking Friday off to come help with the kids so that John can come to the hospital with me to sit and "bite off our fingernails" while we wait through Hyrum's surgery. As for next week, John is going to "try" to work from home. Though I had most of the week scheduled with help, he wanted to use the time to spend with the kids. With Hyrum in the hospital, his work will give him the time for his family. When normally he works many hours, this tends to even out how much time he actually spends at work. His job is one that would be easy to go virtual, but the company, like most others, doesn't allow this all the time because they want to actually see you working. But John actually works better away from work with no distractions.

He has a close friend (who actually is living with us right now) that will help in the evenings so that John can come to the hospital for an hour or two each day.

well, Hyrum is back to sleep...so back to sleep I go also.

March 20, 2008

Dr. Downey,

Yesterday we went to see Dr. Conner for Hyrum's 12-month appointment. We were discussing his weight and height. He seems to be growing in both areas about the same, but not very fast. We were going through everything that we had discussed with you at our last appointment and I lifted up Hyrum's onesie to show her his spine. She did the "wow, that is incredible" She agreed it would be a great idea to see Dr. Smith. He is seeing another of her patients. I'm just wondering if it is a big deal, maybe while Hyrum is recovering from surgery next week, we should have Dr. Smith come to Hyrum's room and see him and tell us what he thinks about this crooked spine. In the past 4 weeks, he has gained 7 oz. We are starting the liquid diet today in anticipation of surgery tomorrow!

From Dr. Downey

As usual, you are several steps ahead of me. I had planned an inpatient consult with him while he is here. We had a visiting professor from Boston today who is a world expert in pediatric surgery and particularly imperforate anus surgery. I asked him about Hyrum's diverticulum and he thought that excision would be the best option. We are still going to scope him and I discussed this with Dr. Snow and we are on the same page. I have decided not to close his stoma. This stoma has given us a lot of issues and I want the urethra to be healed before any attempt is made to close the stoma. I do not think it will be a long time though.

Earl C. (Joe) Downey MD

To Dr. Downey

I am sorry I missed talking with you. I had given Krissia my cell phone in hopes you would call it. I would have loved to be in on the conversation with Dr. Snow, though I'm sure you would have used more technical words than I could even fathom(hehe)! I can see that it would be wise to make sure we don't have any problems with his urethra before we close the stoma, though I was hoping to have changed his bag for the last time today:(. But on we go. What are we looking at for a recovery for his diverticulum, both in the hospital and afterward. I realize that the hospital will depend mostly on Hyrum, but will he be restraint from eating for a few days, or will it be as soon as he can hold the bottle, let him eat? And then how long after we leave the hospital will he need for recovery? I know that after we did the pull down we waited 6 weeks in hopes it had healed. Will it be the same again?

I am also curious about Dr. Snow. Will he be in town tomorrow? Are you going to involve him further with Hyrum?

I am glad to be a few steps ahead vs. behind.:) That will be nice to see what is going on with Hyrum's spine. I visited with Dr. Conner yesterday. She is concerned about his weight and his height. He has not changed a significant amount since September. That is 6 months. By now my other kids are wearing 18-24 month clothes, Hyrum is still fitting his 6-9 month clothes very loose like. (This is how I measure if they are growing). I realize that Hyrum has 100% more issues than all of my others combined, but I am still concerned that there has been no change. I showed Dr. Conner Hyrum's spine, and she was amazed at how "lovely" it looked. I guess if the problem is nutritional you have problems with weight or height, but not both. She suggested I talk with Dr. Smith about the spine playing a roll in is body size. Hyrum seems to have a real problem with his weight. Yesterday at his 12 mo. he was 17 lb 5 oz. Today at his Synergis appt. exactly 24 hours later, he was 16lb 14 oz. He had a clean diaper on for both. Even the nurse thought his weight was odd because he was 16lb 14 oz last month at his Synergis appt. I don't know, I guess I may be rambling, but I am getting more and more nervous about his weight. That is one of the reasons I was hoping to get his stoma closed. To make sure it doesn't play a role in his weight issue. But I agree, we need to heal everything else before we mess with his stoma.

He was sure excited to have his bottle this afternoon and his baby food. He sure has been patient and calm. I think if any of my other kids had to starve as much as he has, they would freak out on me. Makes me sad to have to torture the poor kid, especially when he takes it so well.

Well, see you in the morning, bright and early.

March 21, 2008

Very Big and deep tonsils, midsize, but not large adenoids. No restriction of diet, as soon as Dr. Downey says he can eat, he can eat. The skin tag is off, ointment and hydrogen peroxide every other day, but keep it moist. Skin tag was deeper than they thought. The ear may be irritating to him because of the tube, but this is normal. Dr. Snow made his urethra bigger to encompass the diverticulum, in hopes to not have any problems with it. The catheter for a week. Go home tomorrow. Keep on suppression Retrograde on the urethra in a few weeks. ( 6 weeks) to make sure everything is going well with his urethra. Stoma closer 1 to 2 weeks later. If there are problems with the diverticulum it is literally less than 1/2 in. away from the surface and Dr. Downey will take care of this when he closes his stoma.

Just a quick note. Everything went very well for Hyrum today. We are waiting to see him in post-op when he wakes up. Everything went very well. We left Hyrum in the care of the anesthetist about 8:30 am and we were visiting with the first Dr. about 9:30. and the other two about 10:15. The ENT took out his very large and deep tonsils and his adenoids. He now has a tube in his ear to keep from getting an infection and he no longer has his ear tag. The urologist and Dr. Downey fixed his urethra pouch.

He will have a catheter in for a few weeks. We will come back in 6 weeks for an x-ray to make sure that everything worked. Then in 8 weeks from now, Dr. Downey will close his stoma!!!! We were hoping for this today, but after discussing the possible negative side effects, we decided it would be better to wait and make sure there would be no other problems.

I will send more information later. But just wanted to share some cute pictures and some good news.

March 22, 2008

Hi all,

We are home! Hyrum is still on oxygen while he sleeps and we came home with an oxygen monitor. This beeps every time his oxygen level drops down, which tells us he is not breathing. We are grateful for this monitor as it has already proved useful, when it went off and John went in to check on him, his lips were blue. YIKES!

So least to say we will be staying close to home for a while. He is doing better today than he was yesterday afternoon, but he still has to get used to breathing without tonsils. We came home to decorating Easter eggs with Johns dad. The kids are happy to see Hyrum home, though they were upset that he came home with his "pee bag" again. But we are hoping to only have it for a few weeks this time. He is happy to be home and has already bounced in his bouncer. This is good as he gets excited and takes some good deep breaths. He seems to perk up more and more as he gets around his "toys" and his surrounding's.

He will have numerous appointments in the next few months, but we are happy to get this surgery into the past, though we still have the recovery to make it through.

Yes even with or without monitor's it is still pretty scary. Usually, when we go home, he has been off oxygen for at least a day. This time they were going to send him home no matter what. I was surprised as I didn't feel he was stable enough to be going home. I finally talked to the ENT Dr. and told him he had two choices. The first choice was to stay in the hospital until I felt he was stable enough to go home, or he could send us home with an oxygen monitor. He did not want to do either one. He finally allowed the monitor to order so that I could go home. If he had kicked me out on the curb, I would have had Hyrum sleeping beside me in my bed for the next few weeks. I would have really gotten no sleep at that point because I would have been worried about Hyrum. As it was we were still up a lot as we tried to figure out the monitor. By 6am we got it worked out and he slept until 11:30. Now we are just trying to keep him hydrated. His throat hurts enough that he has a hard time swallowing. But we figured out he will eat his baby food cold. So we put it in the fridge and when we feed him he will eat more.

March 24, 2008

Dr. Downey,

On Sunday, Hyrum had blood in his foley. We went to the ER to make sure everything was ok. They tested a sample and everything was fine. It started clearing up within 2 hours after we arrived. He was slightly dehydrated and having a hard time eating/drinking. He slept well last night and woke up feeling much better. He has eaten everything back to normal. In fact, his big sister pulled out our baby swing from the attic and the picture is what Hyrum thinks about his new swing.

March 26, 2008

Ok, I got a hold of Jill...we will see you tomorrow at 4pm!!

Happy New Year! Should'a been a SID's baby! Procedure #11

January 2

Dr. Downey,
Just giving you an update on Hyrum. Over the last few weeks, he has gained about 5 oz. of weight. Learned how to roll from his front to his back (only for toys...and when you aren't looking) Not only has he gained two bottom teeth, but his top front is now coming in. He loves food. He loves his Dad feeding him since Hyrum has learned that Daddy sneaks the "good stuff", He will eat anything at any temperature from his Dad. If it is dinner time, there is no way you can get him to drink from his bottle...he wants FOOD!! If he thinks he can get food than he will also not take his bottle. He also will sit on his own when he is on your lap. For some reason, he doesn't think he can sit on the floor.

For Christmas, he had the choice of playing with the toy or the wrapping paper he came in, and he always took the paper! It was much more fun! We also avoided most family parties. We only attended one large party, and my folks called and verified that everybody that was coming was indeed healthy. We also had a small party with John's parents before they went to the larger family parties. We really enjoyed that one on one with them, and it was good that we did it before and then didn't go ourselves ...we haven't been able to be around his parents since then, as they got really sick right after that.

After spending three weeks standing in lines at almost every store, I finally was rewarded with being able to purchase the Nintendo's new Wii(sounds like we). I don't know if you have seen one, but it is an interactive video game. I have never been a video game fan, but I could not resist the interactive, get your kids off the couch, and play video games. Hyrum will sit in his high chair for about an hour or so just watching his big sisters and brother playing their games.

He has had his first shot of Synagis, starting last Thursday. He will get one every month until March.

His big brother Karl is 4. Karl has started calling him by his full name, Hyrum John. "I love Hyrum John" or "Hyrum John is eating" or "Hyrum John is crying". Karl loves to lay beside Hyrum and play beside him. He is very content to play this way. I think that Karl is very patient, but looking forward to having his brother grow more and play and interact with him.

Hyrum has found his voice. He loves to babble a story. And thanks to Karl he loves to spit, especially while he talks...that gurgling sound is music to his ears! There has been more than once that John and I will hear him through the baby monitor singing himself to sleep...or taking his binky and hitting it against his mobile just for fun!

He has been dilating at a 13 mm for about 2 weeks. The last few days he has been very loose, even when he doesn't want me to dilate him. I was looking through my bag, I don't have a 14 mm. I think he needs at least another week (give or take some) on the 13 mm.
Today (Wednesday), he has officially taken his last dose of medication. I might be able to milk the container for another dose tonight (which I will try). I will let you know if there is any change in his diet habits or outputs! And of course, if he changes from our happy babbling little guy, I'll let you know also.
If he needs the surgery for his urinary tract, how long after this will we wait before we close up his stoma?

I have talked to my neighbor, Kent Bennion, who works in the NICU. He told me that so far(knocking on the wood of course) the RSV season has not been as bad as other years. I hope this continues. But we do whatever is best for Hyrum. And if he needs to go in, it is good to know that the season isn't as bad as it has been.

I'll keep you updated as we go along. I hope you had a Merry Christmas and the New Year will be better than last year!

January 7

From Dr. Downey

Thanks for the update. I have had this date on my mind of course! I would like to see him sometime perhaps the end of Jan beginning of Feb. I can get a 14 dilator then if it is needed. I was thinking that maybe we should wait about 3 months off the suppression to see if he is going to have an infection. I am also thinking about getting another VUCG but have not decided that right now. It would be nice not to close the stoma before any other surgery down there but I am not sure how this will go-it is a little unpredictable. Why don't we plan on discussing this at the next visit unless he tells us otherwise! Thanks again.

To Dr. Downey

Yes, I was thinking that it was three months of being off the suppression before we (or more you) closed the stoma. He is still working on getting his front four teeth. Three have come in, but the forth is taking its sweet time!

From about yesterday afternoon, he has not been eating as much as normal...even of the solid foods, that he usually can never get enough of. He also will not let me put him down today. I am hoping this is all related to the final tooth. We will be seeing Dr. Conner tomorrow for his weight check, If he is still acting this way by then, I am thinking of talking to her about the possibility of the infection coming sooner than later.

I am hoping it is the tooth as I have somehow injured my knee and am in a leg brace, I am hoping to get in sooner than my appointment on Wednesday, as I am in a lot of pain. I am also not supposed to carry Hyrum since my balance is off...oh the joys of Motherhood, they never go away!

I will keep you posted! Sorry, no pictures today, as time and my mobility limits won't allow it!:)

January 8

Another quick update on Hyrum
1) We went in today for a weight check. Hyrum lost 1.2 oz over the last two weeks.:(
2) To help with this we are adding cooking oil (olive oil) to his foods...he likes the taste and is eating more hearty like!
3) Dr. Conner is also having us see Dr. Fifer up at PCMC for Hyrum's lack of sleeping
4) Hyrum can now sit up by himself on the floor with no help for about 60 sec. before he gets so excited he falls over:)

January 10

To Downey

We saw Dr. Pfeffer today! She, like everybody else I have met, speaks very highly of you! You know you have a great surgeon on your side when you can't find a single person who says a negative remark or gives one of those "oh! That Dr." looks!

She is concerned enough about Hyrum's breathing and snoring that we will get to be involved in a sleep study. Upon looking at the back of his throat (You will have to read her report for the actual names), she is wondering if the roof of his mouth at the back is lower than it should be. She will be looking at this closer and possibly be getting Dr. Muntz involved if necessary (Do you know who is the best Dr for this?). As this is something new to me, we will also do research on what this will mean for Hyrum. I will be having the sleep study on Monday night the 14th and then a follow up on Wednesday the 30th. I will be seeing you in Provo the following day, the 31st.

I'm not sure which is worse, having a doctor appointment every day of the week or spending the whole week in the hospital...either way I don't get anything else done! But my 4-year-old loves going out and about, he has learned how to "convince me" to take him on a lunch date! (He cleans his bedroom and my Front room, where all of Hyrum's toys are)

You should be getting a copy of Dr. Pfeffer's notes. I would also enjoy knowing your thoughts on all of this in regards to Hyrum.

Thanks for all you do!

From Downey

Let me take a look at her report and I will email you back. She may not send it to me until after the sleep study. Dr. Muntz is a very good ENT Dr. I like all of them at PCMC and I do not believe that there is one who specializes in this type of problem. It is actually pretty common for them to deal with this. Thank you so much for the beautiful pictures and for sharing with me not only Hyrum's pictures but your family events in the pictures.

January 11

The last few times I have emailed, I made it simple on myself and sent you a copy of my email to Hyrum's surgeon Dr. Downey. He loves Hyrum and begs for constant updates also. At one of my office visits, after emailing him questions and happenings on Hyrum, Dr. Downey told me he was very sad and upset ( in a joking way) that I had forgotten to send pictures of Hyrum and if I send emails without pictures again, he may "forget" to respond. He also followed the statement up with how much Hyrum means to him personally and he has never felt so connected to any of his patients like he does with Hyrum. He told me how wonderful it is to see Hyrum in his home environment and not only when he has a hospital gown and many tubes and cords coming out of him!

To explain the following happenings: Hyrum is still not sleeping for more than 4 hours at a time. Every once in a while I get a bonus 5 hours, but not very often. He is also a very noisy sleeper. So his pediatrician, Dr. Conner, has sent him to a sleep doctor, Dr. Pfeffer. My visit is described below so I won't repeat that.

In the future, a good sign that you are receiving a BBC of my email to Dr. Downey is how I address the email. I usually try to put enough in the email that encompasses everything to keep you updated on his progress. He has lost about 1/2 of the weight that he gained through the holidays (I'm sure we all wish we could lose weight this fast!)

We are hoping for a slower week next week. I only have two days of Dr appointments (so far!)

Thanks for all you guys do! Mostly the keeping us in your prayers! And we love the letters of encouragement!

January 15

Well, This is what Hyrum looks like during a sleep study. The first two are of him before and the last two were afterward. This morning, I remembered why it is I moved Hyrum out of my room. I slept better the hour at home afterward than the entire night at the sleep study. Hyrum also is VERY excited to be home. He talked most of the way home at 6am and fell asleep about 10 minutes before we got home.

Last night as John was doing diaper duty, Hyrum peed for him. He was mildly concerned as it came out as a leaky faucet. This morning he gave me the same treatment (lucky for me he was in the tub) and Hyrum gave me a water fountain. So I'm not sure how much to worry about that. He has been peeing less than normal, but he also has been eating less than normal.

He still loves his solids (on some occasions he seems to not be getting enough), but his bottle is less than thrilling. During his awake times if I offer him a bottle with a scoop of nutramigen in it he will not eat for the entire time. I have offered him the bottle, he refuses to eat it so I warm up a bottle without the supplement and he still will not eat. It is one chance or you lose. So during his awake times, I just give him the bottle plain figuring that something is better than nothing. During the night hours while he is semi-sleeping than I give him a scoop of supplement and he downs the whole bottle. As for the day, he will only drink about 3 ounces...if I'm lucky, in a setting. He does not seem to be hungry or even any fussier...unless I push the issue and then he reminds me who is boss (and it is not me).

Well, hopefully, you will hear the result of the sleep study soon. Hyrum is being fussy this morning. So time to figure it out!

January 17

Yesterday I got a very interesting phone call from Dr. Pfeffer. She is the sleep doctor that did the sleep study on Hyrum. She was very concerned about Hyrum. She had never seen a patient with such grossly deformed adenoids. She gave me the phone number for Dr. Muntz, the ENT, at Primary Children's. She was going to send the referral letter to his office immediately. By the time I got a hold of them about 2 hours later, they had the referral waiting for me to call. Hyrum's oxygen level was also very low while he slept. It should be between 90-100%, Hyrum was in the very low 70's. Within an hour of talking to her, the home medical equipment place called to set up a time to come that very day to give Hyrum an oxygen producing box with a nasal cannula to sleep with. Surprisingly he actually left the cannula in while he slept last night.

So my hope to have only 1 or 2 surgeries this year has gone down as the number of surgeries has increased. I will know more on Monday when I see Dr. Muntz, but I thought I would update you with the little information that I do have.

I am glad to be getting answers to the various questions we have had about Hyrum. We are glad to have switched Pediatricians, this seems to have really helped us get more answers. We still have some unanswered, like why he is not gaining weight, but like the Dr., we hope that the answers will present themselves in due time as we solve some of the sideline mysteries.

We are still waiting for him to have his bladder infection. I am glad to have things hit one at a time. I just hope our luck continues that way...though it may be better to just "hit the foot" and get the pain over with instead of just "tapping the foot" constantly!

I will keep you posted as our roller coaster of 2008 is starting to gear up and move faster than I would care for it too!

January 21

To Dr. Downey

Hyrum visited with Dr. Muntz today. It has been decided that Hyrum needs his adenoids and his tonsils removed. I will be calling tomorrow (Tuesday) to set up the surgery date as they are not in today. I am wondering if we want to do anything with his diverticulum while he is in surgery. I talked briefly with Dr. Muntz about this, he should be contacting you about this. I just figure if he is going in for surgery, we mind as well get done as much as we can to keep the hospital stays at a minimum. I know you would want a VUCG done first. Let me know what you would prefer to do.

Thanks

February 1

Dr. Downey,

I have been convincing myself all week that I am a paranoid mom. There have been little things, weird things, that I by themselves seem nothing. But as I talk to John (my hunny) and tell him everything, he suggested I just run it past you.

So, Hyrum has had goopy eyes for the last two days, he has quit eating a full bottle (5 oz) I get mostly 3 oz, I'm lucky if I get 4 oz except in the middle of the night when he wants 5+ oz. I have tried to feed him in a quiet, nondistracting setting and still only 3 oz during the day. He also refuses solids. If I'm lucky I get 2-3 spoon fulls and he refuses to even open his mouth. I've tried switching what I feed him, but even on the stuff I know he loves, he will only eat 2-3 spoon fulls. I can only get him to open his mouth about 1 time a day, instead of the 3 that he normally eats.

I believe as a result of his lack of eating his stool output has become extremely liquidy. It has become so liquidy that I'm changing his colostomy bag every day instead of every three.

The next weird item, about a week ago, as I was dilating Hyrum the stick came out a bit bloody. I was surprised, but I didn't have any other discharge that was unusual and what I did have was not bloody, but the normal brownish color. But tonight as I was changing his bag (again), his mucus fistula was his normal color, but the mucus coming out seemed to be bloody.

The only thing that has changed is that Hyrum has started to take Prevacid as prescribed by Dr. Muntz. Dr. Muntz felt that his vocal chords were swollen. It is a dissolvable pill that he actually likes to put in his mouth. Since taking this pill, he has started to spit-up more. In talking with Dr. Pfeffer about this, her theory is that now that his vocal chords are not swollen it is allowing the reflux symptoms of spitting up to come through. He spits up about 1-3 times a day now.

So I'm not sure if I'm paranoid or overreacting. But I thought I would drop the note and ask your opinion.

Thanks

February 2

My guess is that he has some sort of an intestinal virus or infection and I would recommend seeing your pediatrician about this. It could be one of the usual intestinal things or a bacterial infection called C. diff. I would have him checked out for this. As far as the swollen cords etc no one has convinced me that one can predict with assurity the presence of reflux with this finding. We argue about this all the time and there are sometimes that the airway can be pretty inflamed if the patient really is refluxing up into the mouth and microaspirating. This is hard to prove. In this case the loose stools, frequent spitting up, not wanting to eat suggests to me that he may just be a normal baby and struggling with some crud (not very scientific).

Earl C. (Joe) Downey MD

Thank you for your recommendation. Hyrum was going in on Wednesday for a weight check, I think I will move it to Monday. Make sure everything is ok!

I find it funny that we have the same opinion of the reflux.

And for the rest...I hope it is just the crud. With Hyrum, one never knows what is related to what!

Thank you.

For something fun. Here is a picture of Hyrum about a week ago. We change his diaper/bag next to the bathroom sink (obvious reasons). Well he loves the sound of running water and has learned to reach over to grab the faucet. This was the first time that he literally pulled himself into the sink and turned the water on, giving himself a preview bath!

Thanks for your help and your advice!

February 5

Dr. Downey,

I'm sure you know that we have the surgery date for Hyrum. My question is by having the surgery date being March 21, how long do we wait before we close his colostomy? I know back in December, I had hoped to have it taken care of by the end of March. Is it still better to wait and have the two surgeries combined?
I am also a bit concerned about his weight. We saw Dr. Connor on Monday and he weighed in at 15 lbs 15 oz. vs. two weeks ago he weighed in at 16 lbs 9 oz. He hasn't weighed this little since he was 8 months old. He is starting to eat again (yeah!), so I hope this will help him gain weight.

Thanks

February 6

Lets get together in Provo on 21 Feb. Ask Jill if you can be the last patient so we can talk.

February 8
So much has happened, but I was hoping for actual dates instead of estimates.

We have been keeping ourselves busy with school, work and extra activities. We signed up the three oldest kids into swimming lessons. They go for about 2 weeks straight each month. It is enough to make life crazy and grateful for the two weeks in between! Rachel went from level 4 last month to a level 5/6 in February. Sarah was at a level 3 last month and the teacher thought she should stay at level 3, but this month the teacher thinks she should move on as she is swimming laps around the other kids! Karl is in level 2 and loving learning to swim under the water. Hyrum sits on the side lines with his big brown eyes begging to get in the water, but all he gets are more toys to play with while sitting on my lap or in his seat!

John met with both girls teachers this last week. Rachel's goal for school is to make more friends. Sarah is working on being grateful for what she has. Karl is doing so well with his words that after having a conversation with his Aunt Martha she remarked at how well she was able to understand him.

Hyrum's white blood cell count is currently high and the doctors are having a hard time figuring out why not to mention that he continues to bleed from his stoma. He has quit eating his solids, so he has lost about 1 pound (not a good thing) in the last two weeks, which means his weight is lower than it was at 5 months even though he is now 11 months. We have learned that he would rather starve than eat solids that he doesn't like the taste of. Mom and Dad finally put two and two together and realized that there were some things he would open his mouth for and some he refused. Hyrum is currently sleeping with oxygen as his sleep test showed that his lack of oxygen wakes him up very frequently. We received a summary of his sleep study and found it very interesting to read. It explained why he wakes up in the middle of the night. We are working to combine some of his upcoming surgeries. We will have both his adenoids and tonsils removed, and have the pouch on his urethra removed. We are looking at having this surgery on March 21. We are hoping to have it moved up, but have to convince one of the two doctors to do the surgery on a day that they don't normally do surgeries. In preparation of this surgery, Hyrum gets to have a 3 dimensional x-ray and a tattoo!! By marking with an internal tattoo on the spot that needs to be removed, it is their way of making sure that the surgeon will see and only remove the spot that needs to be removed.

This x-ray will take place this Tuesday February 12^th. We will go with Hyrum food deprived, prepared to spend four hours under anesthesia.

As for John and I, with a really big help from his Dad, we were able to finish our basement. There was room for two bedrooms down there. For Jennifer's birthday, we moved both girls into their own bedrooms, moved Jennifer's sewing boxes from our bedroom into Hyrum's bedroom, and I got more lights into our Storage room. We also bought curtains for both girls and our front room! We now get to do the aftermath clean up and figure out how to put every thing that was in the basement before the project in its new place without making the house feel cramped! Now that we are done we are positive that we don't want any more "home" projects for a long while!

As for the picture, Karl and Hyrum are playing the piano, we have learned that Hyrum loves the piano!

February 24

Well can you believe that in 2 weeks, it will have been one year since our little Hyrum was born! As of this past week he is 16 lbs 14 oz. He has been under anesthesia 11 times. He has at least 2 more surgeries that are currently planned. The first one will be in March with his adenoids and tonsils. The second will be to close his colostomy (hook him up) after that. He will have his second sleep study about May to determine if he is sleeping better.

This year starts with us gearing up for other problems that are starting to develop...namely his jaw being offset, his head shape is off, and his spine may be developing problems.

During his last procedure, Karl was able to be with Hyrum while he woke up from anesthesia. Hyrum was pretty sluggish until Karl took his hand and told him he loved him and it was time to go home. Hyrum immediately perked up and within 15 minutes was drinking from his bottle. And as Karl and I was eating lunch with Grandma shortly after, Hyrum was begging for more food.

But despite that he still makes everybody around him smile, whether family or stranger! He is sitting up, and learning to move his body to a laying down position. He loves to laugh and loves to hear laughter.

If his big sisters are crying, he starts to laugh until they are laughing with him.

He got to meet his new cousin Enoch Burrell (son of Jonathan and Corrina) and as Enoch cried, so did Hyrum. Hyrum wasn't so sure about this other baby being fussy.

Rachel & Sarah are enjoying their new found space in the form of their own bedrooms in our newly finished basement. And mom is enjoying rearranging the storage room to create more space for storage! Karl hasn't decided if he likes not getting a new bedroom and has been a little jealous even though he has the best bedroom in the house!