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!

Fun with a Catheter & Procedure #10

I have started this particular Post out with email's written between myself and Dr. Downey. Dr. Downey is the surgeon that has done all of Hyrum's surgeries up to this point, and has been apart of all of his surgeries up to his take down surgery at 15 months old. I believe that it shows a bit of who he is.

October 8, 2007

Dr. Downey

I have a question about Hyrum's foley.

I have changed a consistent stream of wet diapers today. Each time I flush them, there seems to not be a problem and nothing comes out within 5-10 minutes from his penis. And it seems to come straight back out through his foley.

Should I be concerned, as it is flushing well? I have discussed it with my husband and we will be raising his head higher above his feet in his crib in hopes that this will help, As most of the wet diapers have occurred while or after his naps.

October 9, 2007

From Dr. Downey

I will arrange for him to have some xrays the office should call you. I think his fistula should be closed

October 10, 2007

Dr. Downey

After being ushered out of the x-ray room by the nurses and having not seen the radiologist any time after that, I finally tracked down one of the nurses to having her tell me that the fistula is not closed yet.

We have raised one end of Hyrum's crib to about a 45 degree angle in hopes to help the flow out of his bladder.

Do you have any other suggestions to help keep everything working properly?

October 10, 2007

From Dr. Downey

I am sorry I could not come down to the xr dept but I was tied up. I looked at the study and the fistula is open. I have asked one of my colleagues to look at this and we are going to get together this evening after he looks at the xrays. I will call you as soon as we talk. Sorry for the delay. Just leave the foley in place as is for now until I call.

October 18, 2007

Dr. Downey

First I wanted to thank you in helping us get a new foley bag! The new bag is great and much easier to work with than the original.
Second I thought you would enjoy a few pictures of Hyrum in his "natural habitat"!! This past weekend my other kids had a few days off. Instead of leaving town as we had hoped, John had to leave town on business, so I took the kids and we went site seeing around town. A few of the pictures are of the kids at the zoo. And one with my mom holding him. She comes every once in a while, when Hyrum won't sleep. Than she holds and plays with him, so that I can sleep.

Thank you for all your hard work, we appreciate all that you have done for us!

October 18, 2007

From Dr. Downey

Thank you so much for the pictures of your beautiful children. They are always so much of an inspiration to me. Why did we adults have to change? I continue to ponder over him and pray of course. He is a very special little fellow!

October 20, 2007

Dr. Downey

My husband is wondering when we will be starting the dilators on Hyrum. This Monday will be 4 weeks since his surgery and 3 weeks since he came home. You had mentioned that we needed to start about 3 weeks. Does it matter when we start? Should we be doing something now, or will this coming Monday when we come in be a good time to start?

October 28, 2007

Dr. Downey

Hyrum's foley bag has somehow has gotten another hole in it. John was holding him and I looked down...of course, I teased John about doing it himself, but it really was a nasty mess and Hyrum had a hole in his bag that somehow cut through both sides of the bag.

I will call your Provo office and see if I can go and get another one on Monday:)
Well after a week, I can see why you put him to sleep when you showed me how "easy" it is to dilate Hyrum. It has turned into a two-person job! Every once in a while he has a "mucus" brown type substance that comes out afterward. The first time it surprised me, but I figured it was normal as the dilators stimulate this muscle. If this is not normal then I guess I'll be hearing from you. But I'm pretty sure that it is normal.

Otherwise, we will be seeing you on the 6th of November in your Primary Hospital clinic.

October 28, 2007

From Dr. Downey

Let us know if you need help with the bag. The brown stuff is mucus and it should come out periodically. I like doing the dilations in the OR the first time too. It just helps to increase the confidence you have that you are not injuring anything. See you the 6th!

November 24, 2007

Dr. Downey

Hello and Happy Thanksgiving! I hope you were able to take time to spend with family.

Hyrum has been doing great. He seems to be growing more each day. He can now roll from his stomach to his back. He has yet to be motivated enough to go the other way, but we will get something to help him:) We gave him a haircut to get his long wispy strands out of his eyes. It has made his eyes seem that much bigger. We are stopped everywhere we go for onlookers so amazed at how beautiful he is.

He has been taking the dilators pretty well. He seems to be a strong 11 now, after only a few days. Once or twice he has been tight but more often than not he is very loose.

Yesterday, while changing his colostomy bag, I noticed some white spots on his stoma. The best way to describe them would be to say they look like a canker sore in your mouth. He has about three of these tiny spots on the outer edge of his stoma.

I'm sure if this is a problem, you'll let us know. Otherwise, we will continue feeding him "miracle grow" here at home!!

December 14, 2007

Dr. Downey

Just letting you know that we have met with Dr. Conner. Because I wanted to get working on getting Hyrum the "RSV" shot, I was able to have all of his medical records sent to her office before our first visit. This was great, as we talked about Hyrum, she was able to pull up all of his records to verify or get the medical terms for what I was trying to tell her has happened to Hyrum. Her office had also taken all his the various weight and length measurements and charted them to see how he has grown over his life.

We learned that he hasn't gained any weight for the last three months. She is very concerned about this. She is having me put one scoop of formula in his bottle of breast milk. After a full day of this, I think it must have messed up his system. As he woke up about 10:45pm to eat (normal), but he refused to eat. So I thought, well maybe he doesn't like the milk with the formula, or my milk is bad (this happens sometimes). So I had John warm up another bottle, this time with no formula. He refused this one also. I made sure it was good milk...it was, but he refused to eat. he then became so fussy and wiggly. He would hardly let me put his Binky in his mouth. We took his temperature...nothing. I have never had him so fussy. After that first time, when he was only 5 weeks old, we don't let him cry and he seems to not really cry either. But he was upset...very upset. So we gave him some ibuprofen as he seemed to be in pain. By 12:30 I was beside my self with not knowing what to do for him and John was also struggling. I finally called the Dr to see what they suggest we do and John grabbed a heating pad and turned it on low and wrapped him in it as he seemed to be very cold (which is unusual when he cries as he usually heats up). He finally settled down for John and I learned that we had done everything we could for him. But if he refused to eat into the morning to bring him into the Dr's to see if he had something else going on. He slept until about 5 am and ate really well. We did not put any formula in his milk throughout the day yesterday. Last night he was up every three hours to eat...taking about 1 hour to eat. So least to say, I'm exhausted from two days of no sleep. Today, I have put one scoop of formula in his morning bottle. This will be all for today to see how he does, and tomorrow, if all is well, we will let him have two feedings with a scoop of formula in them. This will hopefully build him up a little slower.

Dr. Conner also did a blood test to make sure his various iron, calcium, etc levels were normal. They were. She also had us take a stool sample in for testing to make sure everything there was normal. We haven't heard back yet on that test.

She has also contacted Kids on the Move to see if they can help him get back up to the developmental stages that he should be at. I will be meeting with her the day after Christmas to see how Hyrum is doing and hopefully see if he has gained a little weight.

Dr. Conner's office is also working to get him the RSV shot. I will be checking up on that today.

I was very impressed with how together Dr. Conner was and making sure that Hyrum is at his best and getting to stay healthy throughout the winter.

I have attached a couple of pictures from Halloween, I thought you might enjoy. My neighbor Becky Ekstrom took the pictures at her house. Her sister made Hyrum's outfit, who gave it to Becky's mother(she lives kitty-corner on the other side of us), who gave it to Hyrum.

Thanks for referring us to Dr. Conner, I also have a neighbor that goes to her and loves her also but thinks she is really great.

December 14, 2007

From Dr. Downey

Thanks for the update. Keep an eye on his stoma output during times when he is in pain or refuses to eat. If he stops putting out stool or has voluminous output then we need to know about this. I have been in contact with Dr. Conner

December 14, 2007

Dr. Downey

Thank you for the tip. I will watch the output. So far it has been thicker than normal, but he is also eating more solids lately. That is really the only change is in output!
Here is another picture of Hyrum taken the beginning of December
Thanks again.

And here is the story of Hyrum.

October 10, 2007
Hyrum and I have had a hard time adjusting to home and getting the right amount of sleep and still playing with siblings. He has completely loved being home, but I have been so exhausted that I feel like all I do is sleep and eat and feed Hyrum. For a few nights I got a total of 6 hours of sleep in 2 hour increments, not enough sleep.

My kids don't have school Thursday, Friday, or Monday. We are not able to leave our house to go on vacation, but we are going to spend some great time together right here at home, as they need that attention.

October 18, 2007

After receiving many requests about Hyrum's recovering, I realized that it has been about 2 1/2 weeks since he came home. So I have a few pictures for you to enjoy.

Hyrum has been doing very well, he has not caught the cold or flu that I ended up with! He has loved the attention from each of his siblings and he sleeps very little especially when he hears them around the house.
We have all gotten the flu shot to help keep him healthy and as of November Hyrum will be receiving the RSV shot once a month in hopes to lesson his chances or at least make his case not as bad of getting RSV. He will get this shot monthly until about April or May of next year. When I took Rachel to get her shot (she hates shots), she finally sat on my lap for her flu shot. She didn't want Hyrum to get sick because this would mean that he would have many shots. So she finally consented to getting one "poke" in hopes her brother wouldn't get many "pokes."

Rachel, Sarah or Karl had no school this past Thursday, Friday, or Monday. So we took the opportunity to spend some time together. We went to Thanksgiving Point, and the Zoo.
Grandma Bates(Jennifer's Grandma) was able to come and see Hyrum at home. Jennifer's Mom has also come to help every once in a while to help me sleep.

Hyrum sometimes will sleep for only two hours at a time at night. After 4 hours of sleep, I don't quite feel ready for the day.

As you remember, Hyrum came home with a catheter. His intestine was attached to his urethra, which they cut and attached it in the correct spot. By putting in the catheter, this prevents any urine from going through the new hole, allowing the new hole to close on it's own. So far this has not happened. This coming Monday, Hyrum will go in for another x-ray to see if this fistula hole has closed yet. If not than it will be closed surgically. It is an out patient procedure, so hopefully he will get to come home the same day.
This past weekend, Hyrum's catheter bag started to leak. We put a zip lock bag around it until we could get a new bag. It was pretty grouse to see how the zip lock bag was catching more urine than the catheter bag. On Wednesday, we got a new bag. This bag is great. It fits in smaller places and the piping isn't as long from his leg to the bag!!

I hope all is well with each of you and we appreciate all the prayers and thoughts that are sent our way!

October 18, 2007

This year, my girls have come up with their own costumes for the first time in order to "help mom". My sewing projects are cut up and ready, but I'm so tired and my house is in such a state, that it all is still sitting there waiting for me. My mom is trying to convince John to hire a maid to clean the house as I'm not getting to it. On most days John is digging his clothes out of the dryer, and I tell him to be grateful they are at least in the dryer and not on the outside waiting to get in!

I remind my self that there is a light at the end of the tunnel, and I just can't see it yet!

October 18, 2007

From neighbor and friend Barbara Stoddard

Dear Jennifer,

Thank you for the update. I have been hoping to hear how Hyrum was doing. We do continue to keep him and you in our prayers. Poor little guy. Another possible surgery! He sure seems to have to do everything the hard way. Sounds like he is making good progress though.

We are just across the street. I am happy to come and watch Hyrum so you can nap, when I am home, or the children can play here.

October 18, 2007

Email in Response to above Barbara Stoddard

Thank you for your offer.
My mother has been trying to convince me that I am not Super Woman. That it is ok to scale back. I have gotten Karl involved in school and gymnastics that I have a hard time taking a nap in the mornings and in the afternoons, the girls come home needing help with homework and just plain attention. Tuesday and Thursdays they have gymnastics and piano lessons. My mom finally came down yesterday afternoon and forced me to lay down and take a nap. I got three hours solid for the first time in a few months.

Hyrum, during the day, will nap for a max of 1 hour (usually less) and at night, the last few days it has been about 1 1/2 hours to 2 hours at a time, but he usually sleeps for about 2 1/2 hours to 4 hours.

John has gotten used to coming home to fix dinner, or have dinner still in the process, and coming home to the kids doing most of the clean-up.

We are working on making sure the important things happen, like kids getting positive time with parents and each other, that I get sleep, and the kids get to school and bed on time. Everything else is bonus material.

Thank you for offering to help, I will try to take you up on your offer and get over my fear of imposing. And like wise you are more than welcome to come check up on us. Anytime my van is outside you can bet I'm home!

October 24, 2007

Ted Bates

My sleeping has become critical. Right now, nothing else matters. But for a person who doesn't enjoy doing nothing. I'm having a very hard time. I feel that all I do is feed, eat, drive kids to activities, and sleep. I don't cook anymore, and I don't clean my house. Between John and the kids, they do most everything. If I get to something it is bonus time. But this is not healthy for everybody else.

Monday was very hard as I could not sleep anywhere. My mom came to the hospital to sit with me as the freeway from her house to mine was backed up and she would not have gotten there in time for the kids, so John stayed home and mom came to help me. We finally found a few chairs that were hooked together and I used my mom's jacket and propped my feet on a little end table/stool and slept for about 1/2 hour. Hyrum's surgery was set for 10:45, but the doctor pushed him back to the end of the day because he didn't want to do the surgery, but he needed to spend some time to start some other things for Hyrum. This required that Hyrum not eat. So he ate milk at 4 am, refused juice at 7 am, they gave him juice at 11am which he downed 3 oz. and we got done with everything and he was able to eat milk at 5 pm. We literally paced the floor all day. Yesterday I started to spread out his feeding schedule to a 4 hour schedule instead of the 3. He did great and even better through the night. We will continue to hold to the 4 hour in hopes that he will sleep better at night also!

I could sleep all day and still not get any energy when I sleep for only 2 hours...and during the day it is 1 hour max. Last night he slept 4 hours between feedings, so at least I got about 3-3 1/2...much better. I feel great today!

October 25, 2007

From Ted Bates

Sleep is a very important thing. My wife Lana has had trouble sleeping for decades and after awhile it destroys one's health. You can get so wired that there is no way to sleep.

Best of everything to Hyrum and you. I would hope at some point you can have some sleep. However now it would take days or weeks to return to normal.

When I got out of the Air Force and the nuclear weapon job it was six months before I realized I had lost my taste buds. Stress has strange ways it gets at us.

We had many issues with Hyrum's Catheter, mainly leaking. The kids would carry him around dragging the Foley bag around on the floor. Hyrum's Fistula never did heal, so he ended up needing to go back in again. I also had problems with Sleep, Hyrum thought he needed to eat every so many hours so I was up every 3-4 hours for an hour at a time as he was a slow drinker and I had to warm up his bottle.

December 5, 2007

As I started this letter, I realized that the last time I wrote an update was the day Hyrum came home from the hospital...opps!

So lets see if I can catch you all up! Hyrum came home from the hospital on Oct 1 with a Folley (or catheter) in place with hopes that he would heal naturally where the doctor cut his intestine off his urethra. For reference, the difference between a folley and a catheter
is that a catheter 1)can be placed while you awake, & 2)it goes in the urethra only far enough to catch the urin. Now a Folley 1) needs to be placed with you being a sleep because 2)a folley goes all the way up to your bladder with a balloon to prevent any urin from going through the urethra, thus allowing the new hole to heal naturally leaving less scar tissue.

This Folley was to be in place for 2 weeks. Hyrum leaked every once in a while, but nothing major or consistent. We learned we had to have him sleep more at an angle to keep his folley lower than his body. He could not lay on the floor for the same reason. We bought a bed brace to fit on our couch to keep him from rolling off the couch. We also learned that he could not be in his car seat for very long. This prevented us from going very far. So Jennifer's Grandma came to visit Hyrum at his house instead. Within the week his urin bag started to leak. After another few days we got it replaced with a better bag.
And during a 5 day vacation from school we "vacationed" at home instead of going somewhere else. We went to the Zoo, which the kids loved. We put Hyrum in his stroller, raised up his back to keep him elevated…and off we went having a lot of fun! Karl loved seeing the animals and riding the train. Everybody was tired after that day, but not tired enough, as we went to the LDS church children's museum to play some more that day.
We also went to Thanksgiving Points petting zoo. Each of the kids got to ride a horse and feed a few of the farm animals there. We even got to ride in a wagon pulled by a pair of Clydesdales.
That afternoon we went to an out door part of Thanksgiving Point called Cornbelly's. They had fun activities for children, including rides, go carts, a maze (that we got very lost in), and other fun activities that the kids had a lot of fun with.

Hyrum enjoyed the Dinosaur Museum as the kids ran through exploring the various aspects of the museum.
After this 5 day filled of fun, Hyrum went back to see if his hole had closed up on October 16. Instead, we found a diverticulum, which for the rest of us means a pouch on his urethra. In hopes to have more time to heal, the doctor decided to leave the folley in place another few weeks, but because it was time to start dilating his new anal hole, we set up a time to come back the next week. They were going to put him to sleep to show me how easy it was to dilate him. And possibly take out his folley. So on Monday Oct 22, he ate his last meal at 4 am and drank his last clear liquid at 7 am, which he would not drink. We got there at 9:30 am to start the process of his surgery and have his x-ray done at 10:30 am. We finally got his x-ray done at 11 am and back up to the surgery. After much miscommunication between the hospital staff (different groups don't talk to each other well), we ended up being skipped and moved to the end of the day. They allowed Hyrum to have more clear liquid at 11:30, which he drank a solid 3 oz. He finally got to surgery at 3 pm. Jennifer's mom and sister, Martha, showed up in time for lunch and for Jennifer's mom to walk Hyrum in the stroller while he slept…in hopes to keep him a sleep, while Jennifer cat napped on a chair in a waiting area of the hospital, having had no sleep the night before. Both Jennifer and her mom were surprised at how well Hyrum did that day with no food. He hardly fussed and slept most of the day. I was able to gain my Halloween costume that day as they allowed me into the surgical room to see how "easy" it would be to dilate Hyrum. He was very excited to get food about 5 pm.
As I got Hyrum dressed, he was very giggly and happy. He hugged his clothes that I laid next to him. He was really happy to be going home. It was as you can see on his face an almost, "is this for real, we are really going home" look on his face. We left with the folley still in place in hopes to have his urethra heal more.











They left the folley in place until the 6th of November. After spending the whole day with no food, we were able to convince him to eat every 4 hours instead of every 3.
During the next few weeks , we learned that dilating Hyrum while he was awake is NOT easy. After about 3 weeks he finally quit fighting the dilators and would just lay there playing with a toy he was given to distract him. We get to do this every morning and night. If you can't figure out what we do with the dilator at this point, than know that we are stretching his new rectum muscles to get big enough for stool to pass through.
After about a week, Hyrum also quit fighting his antibiotic that he is on full time orally to prevent urinary tract infections. During this time Hyrum's bag leaked all over his Grandma Burrell's kitchen floor and needed to be replaced for the second time.
We were able to enjoy Halloween. We have a wonderful neighbor who we have to thank for Hyrum's cute pumpkin costume. It is a bib that was too cute to not show off. Both girls were princesses and Karl was Thomas the Train. Hyrum was able to say hi to each of the neighbors before it got cold and dark outside! We have another wonderful neighbor to thank for these pictures.
Hyrum went back in on November 6th and, of, course his pouch has not closed. After 5 weeks they didn't think it would close any more than it already has. So they took out his folley. We were glad to not need this any more. Hyrum is now on antibiotic full time until the end of the year.
We had a wonderful Thanksgiving Day with John's family this year. We
then used the rest of the weekend to start the wonderful building project of finishing a few bedrooms in our basement in hopes to make the space more usable.
We have also given Hyrum a major hair cut. His hair was in his eyes, so his mommy allowed Dad to have the clippers to make it all even.
Our family has already been sick this season. We are hoping to get Hyrum an immune system shot to build up his immune system against RSV. At the request of Hyrum's
surgeon we will be switching pediatricians in hopes to get things done right for Hyrum.
While at the doctors this past week, November 29, the doctor got the privilege of dilating Hyrum. When most babies are first dilated they start at an 8 mm. When Hyrum was first dilated he was at a 10 mm. Over Thanksgiving, we were told to move him to an 11 mm. At this appointment Hyrum was moved to a 12 mm. The surgery is usually performed when the baby is at a 14 mm. Around the New Year, Hyrum will be taken off his antibiotic to see if/when he will have a urinary tract infection. He has to go 3 months with no infection before the final surgery will be performed to close his colostomy, or put his intestine back together. If he has an infection, which he probably will, then Hyrum will be put back on the antibiotic until the infection is gone and then he will have surgery to fix the problem with his urethra for good.
Some may ask, why wait if you know it is going to happen any ways. The answer is simple…nothing is easy for Hyrum….the longer they wait the bigger he gets. So we will wait. We are hoping to keep him as healthy as possible, but hope he can fight what comes his way.

December 7, 2007
If he has had bad respiratory problems that are documented, you may try to get him an immune system building shot. This is to help keep him healthy. The reason you need it documented is because you want your insurance to cover the expense of the shot as it usually runs about $1,000 per shot which is needed once a month through the RSV season. But it is cheaper than having the little tick in the hospital for even one day.

I think this is the first week that everybody at my house is actually healthy.

December 7, 2007

He is always congested, but he is at his healthiest. He is starting to roll and he loves to eat food! He has two new teeth, and he loves the sound of his voice!

December 16, 2007

This is my Mom’s Christmas Letter has a bit of her life in all of this in it and how crazy her year had been!

Hello and Merry Christmas to all,
This may be a shock to everyone, but I'm am attempting to write a Christmas letter.!!!!
We have had quite a year! It was very busy, but we have had many blessings. It began with Jennifer going to bed with her pregnancy in January. I moved in with them during the week and came home on weekends. I was also taking a software embroidery class during the week, so I would come home on that evening and return to Jennifer's the same night. Martha, James and Phil survived on their own. I think they had a great time.
Jennifer's baby, Hyrum, was born in March. Most of you know the details of his eventful and complicated life thus far. About a week after he was born I caught a cold or something and was grounded from spending time with her family. How I appreciated all the help they received.
Well, I got over whatever I had in time to fly to David and Jill's for the birth of Devin in May. I enjoyed spending time with them. School was out for the summer, so I was able to spend time with all the children. Mariah loved to play "Stinger Bee." She could win every time. Brayden loved to play with my new cell phone (He could work it better than I could) and with my computer. He designed himself a dragon, which I have finally embroidered for him.
I came home in time to prepare for girls camp (I didn't have to do much but attend) and to finish preparing for the Bunker Reunion the last of June. Jennifer was my right-hand secretary for everything. She kept in touch with as many as she could through all her exciting days with Hyrum. Three of my sisters (Sherryl, Evelyn & Elizabeth) came the last few days before the Reunion to help out. That was great fun. What would we ever do without family? Anyway, thanks to all who came and supported the reunion. Everyone left before I had much of a chance to visit, but it was great to see everyone.
The reunion over, it was time to pack up Martha and James for their move to Philadelphia. James was accepted into medical school, to begin in the fall. They found an apartment over the internet, rented it sight unseen, … well almost, a member of their new Ward viewed it for them, taking pictures and sending it over their phones. Wow how life has changed.
July and August found Phil and I with Martha & James, each traveling in our own cars going East. A 5400 mile round trip for Phil and I. Our first stop was Jonathan and Corrina's in Yankton, SD. We spent a Sunday with them as Martha and James were Jonathan's Sacrament Meeting Program. From there we stopped briefly at Winter Quarters visitor's center. We have family buried in the Winter Quarters Cemetery. From there we traveled to Nauvoo where we meet David and Jill and their children. We had a wonderful time. David, Jill, Martha and James were able to attend a session in the temple. Martha was able to play on a special piano located in the Assembly Hall of the Nauvoo Temple and Jill met her Mission President, who was the Temple President. Phil and I watched the children. We were able to watch the Nauvoo Pageant. Valerie, Sherryl's daughter, reserved us seats on the second row. Valerie worked in the costume department. The next day we stopped at Carthage Jail and then traveled on to David's home. Martha gave a recital on Saturday night and played the organ for his Sacrament Meeting. David gave Devin his name and blessing. James and Martha presented a fireside on Sunday evening.
From there we went North to Martha and James's new home. We stopped at Gettysburg on the way up. We gained a new appreciation for the events of the Civil War.
We got to the apartment in time to meet the truck with their belongings. Because the truck could not be on the street overnight, we (with the help of the driver) empted the truck on the grass. Later Ward members showed up and helped us get everything inside.
Phil and I spend about a week with Martha and James, helping them unpack, etc. then began our journey home. Before we left the area we had a drive around the Liberty Bell, etc. and visited Valley Forge. Valley Forge is a beautify park now in the mist of large towns. We stopped at Kirtland and spent nearly a day there seeing the sights, visiting the Kirtland Temple and the John Johnson home. From there we made a quick stop at Jonathan's and then on home. We were gone about 3 ½ weeks.
Martha began flying to Utah in September to finish her Master's Degree. She flew in on Monday and home to Philadelphia on Friday. Thus she became an important part of our lives. Between Martha and Jennifer we've managed to keep very busy. Martha had a recital in the middle of all this and began struggling with health issues again. Keri is also in school and I watch her children on Wednesday evenings. I have managed to be here some of the time. They are cute boys, if cute is OK to use with boys!
We were sorry to learn of Aunt Pam's (JoAnne's Aunt) passing, but grateful we could attend her funeral in Arizona. It was good to see extended family again. Our love goes out to her family. Martha has her piano and we are grateful Aunt Pam was able to see it refurbished while she was here at the reunion.
The last of October I flew to Jonathan and Corrina's for the birth of Enoch, our 25^th Grandchild. Corrina was home from the hospital before I arrived as Enoch came a little early. I changed my ticket so I could fly a week earlier and some Ward members watched the boys until I arrived. Jacob is learning to play the violin. I liked listening to him practice. Reddeck used to be a quiet little boy, but he has grown up and loves to wrestle with Jacob. He gets hurt, gets his loves and jumps right back in. Jacob is a good older brother to him.
The day I left for South Dakota, Phil learned that Uncle Loren (Phil's dad's brother) had passed away. He drove to San Diego for the funeral.
My sister and her husband, Sherryl and Al, pop in once in a while with their truck loads. We are always glad to see them. My sister, Elizabeth, stops by occasionally also. Actually, while I was in South Dakota, she and her family had a Thanksgiving feast here. I heard it was great.
Phil, Grandma Bates and myself had a very quiet Thanksgiving Day. We watched movies on TV. I think we were too tired to do anything else.
Somewhere in there is George, Kristy and family and Julie and her family. Loren and Zack mowed our lawn once while we were gone. I'm not sure where time went. I managed to make it to a ball game or two. I even managed to take care of the leaves in the yard before it snowed on them. Zack and Dallin had a great time playing in them before that happened.
Phil has a couple of calves in our back acre for the winter that belong to a neighbor - so he is worrying about the water, etc. We usually don't keep animals over the winter as we don't want to take care of them during those wonderful months.
So here it is the 9^th of December. We have our Christmas Gifts completed and I am even writing a Christmas Letter, so to speak. Martha flies in tomorrow - it's final's week for her and Keri.
Phil keeps busy at work and keeping up with me. He works hard on both of our Genealogy. He takes his lap top where ever we go so he can update what anyone will give to him in the way of information. He says if you have something you want to give him, please e-mail him at: grandpaburrell@gmail.com. We appreciate each of you and are grateful for you.
Here it is the 16^th and I haven't mailed this.
We enjoyed visiting with the Bunkers again at Theron's funeral. We again express our love for them at this time of their sorrow.
Exams are over and Martha has returned home for the season or until next year. Shelia (Phil's niece) and her family spent the night with us on Friday on their way from Montana to Arizona for Christmas. We had a family party while they were her.
We give thanks for our many blessings and express joy in our Savior. May this season find all well for you and your families.
Love,
Phil and JoAnne