Going home

We are going home!!! Our discharge time is 11:00am. The doctor said that Aiden's recovery has been "unbelievable" and I am so grateful for the medical staff here who are so amazingly patient and knowledgable. They will forever be my heroes. Charlee once said that because of her experience at Primary Children's and her daughter, she will never drive by without saying a prayer of thanks. I feel the same way.

End of the tubes

It is official - Aiden is tubeless. His TPN and antibiotics were both discontinued tonight and he is eating well on regular formula. The doctors all say that his recovery has been phenomenal and he is much more alert and stable than they thought he could be even by Monday. My little trooper. They did switch him from regular formula to soy because he seems to be lactose intolerant like his cousin Landon - we call the sound he makes the Darth Vader when he has milk. Thanks a lot, Landy Boops!

The above picture shows his PICC that is still in until he gets discharged - just in case something goes wrong and they have to add fluids or more IV medication, but there are no tubes attached and he is very happy. The only wires that are attached on him now are the monitors for heart, oxygen, and pulse.

The Fredricksons from the ward came to visit and I freaking LOVE Blaine and Sheri - thanks to both of them for making my evening. They are wonderful people and so funny to be around.

Thanks to Kari, Chris, Shiree, Jess, Breanna, and Kelle who moved me secretly into my new place and have everything set up a day early to have baby home tomorrow. They are all my heroes.

Catheter out!

The catheter is out and the TPN will be ended in about an hour... every little step is closer to home!

Yay! Thanks to Uncle Chris, Aunt Kari and the Smedley cousins for visiting. Love you all.

New discharge plans

We had a really great night. Okay, the bed isn't that comfortable, but I was tired enough, I didn't really care. Aiden slept through the night and had to be woken up to eat his pedialyte. He is talking and smiling this morning really well. He still has had nothing for pain except some Tylenol.

Anyway, the surgery team just did rounds and we have a new plan - today they will remove the catheter and stop the TPN because he is doing so well with eating. He will eat regular formula and have IV fluids to supplement. The new attending doctor also is going to adjust his antibiotic so that his dosing will be finished tonight!!!! YAY!! They will want to keep him at least until tomorrow afternoon for observation. So there is a really great chance that we might be going home tomorrow because he is doing amazingly well.

Swelling and pain going down - appetite and awake time going up. I will include a picture - they have a cute mobile that is attached to his bed and last night, he watched it turn for almost 2 hours. He hasn't cried and is doing really well. The staff here will miss him and I will miss the staff and other parents - but not enough to stay.

For those who don't know, Aiden and I will not be going home to our regular house in North Salt Lake. We are going to be moving in with Uncle Chris for a little while. It will be a transition time for certain, but we have done it before and it will be great. We have lots of support from people - family and friends. Uncle Chris has very graciously moved us into his master suite at his home so we can have the attached bathroom and a very large room that will fit both of us nicely. Shiree and Jessica have spent the last 3 days packing my house to get us ready for the transition. I will never be able to repay all of those who have just taken our needs to heart. I appreciate everything everyone has done. My heart is so full.

FREEEEEE!!!

We are free from PICU! We are in a private (and very quiet) room!! (sigh) It is so nice. We moved around 12:30pm to the IMSU (Infant med surg unit) and it is much lower-key here. We are in room #4305 (phone number: 662-4305). The nurse only needs to fiddle with Aiden about every 2 hours - he is much more awake and has only had Tylenol in the last 24 hours for pain.

The urologist said ABSOLUTELY NOT to remove his catheter because it was such a beast to put in and he wants to make sure that he doesn't need it before they take it out. (He once said that he was going to leave it in until Aiden's 35th Birthday - just in case... it was that difficult to place)

They let Aiden have 1 oz of Pedialite and he LOVED it. I imagine that his little scratchy throat feels better after the ventilator tube. We can repeat that at 6pm. He will slowly transition back to straight formula over the next few days.

The big step for Mom today is that Aiden smiled - really smiled - for the first time. It wasn't gas. Promise. It was in response to talking to each other and really bonding for the first time in 5 days.

We had 3 visitors today - Uncle Chris came and helped transition to the IMSU. Once there, someone in the ward found out that we were here and my visiting teacher, Jill, and my home teacher, Lynn, came to see us. It was so neat to have that support. For those of you who don't know, my ward is amazing and has always been 100% supportive of Aiden and me.

Tentative Discharge plans for Next Monday

Doctors came and did rounds this morning about 10am. The tentative plans for discharge are as follows: They will not discharge until he has been on antibiotics for 7 days (which will be Monday). With him being on TPN (nutrition supplement by his PICC line), he needs to be on it 5 days total and then off for 24 hours before they will discharge (which is Monday). They are extremely optimistic about his progress. His belly is less swollen, his kidneys are doing well, and his "boy parts" are getting less and less swollen every day.

I have been able to make great friends while I am here. The baby who has been rooming with Aiden will have brain surgery today and was born with hydrocephalus... this cute young family has 2 year old twin boys and this 1 month only baby girl. They live in Mesquite and have been here three weeks already and will be here at least another month. The baby's name is Zoi and the Mom is Chelsea. Please remember them in your prayers - They have never had the opportunity to really be together as a family... this baby is so sick and the family is so sweet. Thanks.

Fantastic Night

Aiden had a great night!! Woo - hoo!!! He threw up a bit after they removed his NG tube, so he had a couple of xrays to make sure everything was okay, but the xrays looked great. He has not thrown up since. His catheter is leaking, though, so that is not great since it took the doctors so long to get it in.

He slept through the night with the exception of a very poopy diaper change. The surgical team came by about 5:15 this morning and the doctor said they would try to remove the catheter today and also try to start him sipping sugar water for a bit. If he tolerates both of those, we will be transferred to a recovery floor!! YAY!!! Hopefully, that will happen this morning. We can get into a quiet room.

They removed the dressings on both of his incisions and I was able to get a pretty good look at the wounds. His hernia incision is about 2 inches across the bottom crease of his belly and it looks great. The appendix incision is 2 1/2 inches and up near his rib cage - both are on the right side. He doesn't seem to mind when I pick him up and he puts weight on that side, so I am able to cuddle him comfortably.

He is still sleeping and is the jewel of the PICU. Nurses, therapists, doctors - everyone loves to stop by and see "the little old man" and I caught one of the respiratory therapists cuddling and rocking him after I stepped out for a second. She was singing "I Am a Child of God" to him and rocking him. What a blessing to have professionals that know that a tender touch is important. They take all aspects of this job very seriously and know that a cuddle can be just a healing as all the medicine in the world.

My family is camping this week and I was looking forward to spending this time with them, but they have been so supportive. I hope they are having a great time and are enjoying boating today at Pineview.

Thanks again for everyone's love and support. I am getting messages from near and far - friends and family - of their love for Aiden. Thank you for keeping us in your prayers and in your hearts. I am truly blessed to be surrounded by all of you.

LOVE YOU ALL!

good day...

All things considered, a very good day. At about 4pm, the doctors all decided that our little man was doing great and decided to take out the ventilator and the NG tube (the tube in his nose...). We finally got it out about 4:30 and Mom was holding him by 4:35. When they disconnected everything, all his vital signs stabilized amazingly well and he was wide awake for nearly 5 hours. I was so happy.

Other than that, nothing much has happened with him this evening. Shiree and Jessica (cousins) came to visit after packing much of my house - getting ready to move. They each got to hold him for a long time and snuggle.

It is about 11pm now and tonight will be the last night I will have a real chance to get great sleep because tomorrow we will be transferred out of PICU. I have a sleep room at the hospital tonight and will take full advantage. I feel like I can leave him if I know I am just down the hall a bit. Sorry it is so short, but at least the pictures look great...

Answers to questions

Thanks for the comments and support everyone. Just as an FYI, the pictures make the whole experience look a lot worse than it really is. Like I found, Aiden's things are not life-threatening and there are so many kids here who are so much more sick than he is. He is really doing great.

To answer some questions, in looking at the testicle issue, it seems to becoming more soft and pliable, which means they are optimistic about it not being dead 100%. I would post pictures, but...ewwwww....

Also, Jodi, yes his bowels are doing better and there is great bowel sounds and gas passing... YAY! Who knew a mother could be so proud of gas and peeing?! He is sleeping well, but the morphine seems to drop respirations. They are going to try a lower dose and see if that still holds the pain with a little tylenol help.

Looking Great

Aiden looks great this morning. The first doctor who did rounds this morning said that he didn't want to take out his vent until tomorrow, but then came back and said that his belly was much less swollen. They decided to do another test to make sure he is ready to be taken off the vent, draw another blood gas, and then they will be able to remove the vent. So, tentatively, the plan is to remove the vent this afternoon or evening, watch him here overnight, then move us tomorrow to another room. I will be so very glad to hold my baby. He is tolerating everything really well. The only thing that really is upsetting is when we try to clean his face. Funny - he is a true boy.

The post-surgical team also dropped by to look at scarring and xrays from the surgery. They feel he is doing really well with his recovery from the surgeries

Social work dropped by and they have arranged for me to have a sleep room during today and tonight - a very quiet dark room with a very comfortable bed. I will be able to stay really close and still get rest. YAY!!!

RATS!

They were planning on taking out the vent because he was doing so well on his tests, but the doc just came by and said that she is worried about his belly still being so swollen from the surgery and pushing against the lungs too hard. Without the vent, there could be some problems. So we will do it in the morning when his belly is softer. He was totally angry a little while ago because of the changes to his IVs and tubing. God bless Morphine and Ativan...

Shift Change

Shift change is here and from 7 - 8pm, parents are not allowed on the floor during report so... MOM GOT A SHOWER!!! YAY!

They started the TPN for baby for nutritional support and also started Zosyn (antibiotics) - just in case. I clarified with the doctors why they did the ventilator to begin with and this is what they explained to me... When a baby this little has 2 surgeries within the short amount of time, they worry. But when one is an appendix bursting, they worry about the baby becoming septic (the whole body getting a massive infection) so they sually take the precaution of doing a ventilator and a PICC line so if something happens as an emergency, they do not have to place either of those things in a rush. It causes less damage not to do it in a trauma situation. They can just place medication or start the baby breathing with little trauma. Makes sense and I am grateful for it.

Aiden has stayed sedated and stable for the last few hours. They decided to try him off the ventilator for an hour to see how his blood gas labs hold up. If they are good results, that means that he is doing well oxygenating his own body. If he can successfully pass 3 or 4 of these tests through the night, they will remove the vent early in the morning. Once that happens, we have 2 great things...

1. We can move from PICU and...
2. MOM CAN FINALLY HOLD BABY!!!! YAY!!

Aiden is just sleeping right now and hates the noises of the monitors, but is still pretty sedated. When the morphine and tylenol wears off, he is in a lot of pain, so I am okay with him having the medication if it will have him heal better. His genitalia is still really swollen, but they will address that issue tomorrow.

The urologist wants to wait another day before looking at his testicle because he wants to give it time to either start healing and getting blood flow, or to further die off... whichever it is going to do.

For anyone who would like to call or visit, feel free. The number to our room is 662-2315 and we are in PICU bed 15. I am sorry I can't have my phone on in the room and can not make long distance calls out, so I will do my best to keep everyone informed. We will probably be moving tomorrow, so I will keep this updated.

Thanks to Chris and Charlee who dropped by to see Aiden. Unfortunately, he is sleepy and it is very noisy and chaotic here, so neither could stay long.

I love you all! Thanks for the prayers and concerns. I am sorry that I am not better able to communicate with you all, but I will keep doing my best.

PICC is in!

The PICC want fantastically. He is doing well after that and a little Ativan. He is sleeping. The Ativan will delay him getting his ventilator taken out, but it is worth it if he is comfy. They are planning on taking the vent out in the morning. Yay!!
I will also add pictures that we had done a week ago for everyone. They are cute.

...

2:20 and Aiden is doing much better. His vitals have stabilized and he is responding well to the medication. He has maintained a great blood pressure for almost 2 hours. He is doing great. They are still going to place the PICC line, but the pulmonologist said they will try to pull the ventilator about 2 hours after the PICC is in.

Mom is trying to read Harry Potter, but this is the 4th time I have read it, so I may need to stop by the gift shop and see what they have there... :)

Thanks to everyone who is being supportive of us and keeping us "prayered up." We can really feel the support.

Aiden Day 3

So, we are going to be here much longer than originally anticipated, so I thought I would start a blog about Mr. Aiden so I can remember all that has gone on here.

We came to Primary Childrens on July 19th, 2009 because Aiden's lower abdomen and pelvic area (yes, including the boy parts) were very swollen and hard. He had been screaming for over 24 hours, but the pediatrician had said not to worry about the crying because this age (3 weeks) is when colic begins to manifest, but it was not just crying, it was screaming. So after the swollen genetalia, I decided that sometimes Mom knows best and I just took him to the ER. Because of his hypospadius issue, I knew that the ER was the best bet on a Sunday afternoon. After a long, extensive evaluation, the doctors found a hernia that had penetrated Aiden's testicular canal on the right side. He was very patient but very uncomfortable.

They did surgery to correct the hernia and he did well through the surgery. They found that the bowel that had protruded through the hernia had cut off blood supply to the testicle and most likely, it had died, but everything else looked great. At that point, they said they would keep us for 48 hours and then be okay to go home. Yay! However, through the night on Sunday, Aiden just could not keep comfortable, so they decided to give him several doses of Morphine. The problem was that the morphine would make him stop breathing and with oxygen sats around 70% and a heart rate around 200bpm. They decided just to see if he started to adjust, but after a very bad night, they decided to lower the morphine as much as possible. They gave Aiden his last morphine dose around 8am and by 12pm, it wore off, but he was extremely lethargic, but very much in pain. His output was also not happening, so to help him pee, they decided to place a catheter, but with the hypospadius, they had to have the entire urology department there. Finally, after about an hour, the lead urologist finally got the catheter in. Poor bug didn't even cry. After his vital signs did not stabilize, they decided that they may have nicked a bowel in the surgery, but Xrays did not show anything. Once again, Mom insisted that this was not a normal Aiden and he was not responding normally. I pushed for another evaluation by the surgical team. Somewhere in there (the timing is a little hazy) the Smedley girls came so I could go home and get a shower and some clean clothes. Bless them. They have been amazing.

The surgeon decided that to go back in a look at the entire intestinal tract would be the best bet. So - last night about 6pm, Aiden went back into surgery. The doctor found that the intestine that was in the hernia was not compromised, but that a piece of the appendix had also been caught in the hernia. That piece had died off and broke loose filling the entire bowel with infection. YAY for Mom's intuition. They removed his appendix and... there you go. But during the surgery, his blood pressure took a nose dive, so they decided to keep him in NICU. The other problem arose that he was having a hard time breathing on his own, so they put him on a ventilator.

So last night, about 9pm, I was finally able to see him. But I can't hold him until his ventilator is out, so that is hard. In the night, his pulse came down (yay) but his blood pressure stayed too low. About 1am, the team decided to try weaning him down from his ventilator. So, since that whole experience would take a couple of hours, Mom went out to the car and slept for a bit. It was quiet and dark. Ahhh.... Nice.

Through the night, things started to stabilize a bit, but it is now 11am, the blood pressure is dropping again and the pulse is rising again. They have pushed a lot of fluids, but it doesn't seem to be helping. They just made the decision to place a PICC line and give him TPN. We were hoping to be out of here by this afternoon, but it doesn't look like that will happen.

Luckily, Aiden is really sedated and doesn't care what is happening at this point. He has 3 IVs, a ventilator, an NG tube for suctioning his stomach, a catheter, monitors for EVERYTHING and now will have a PICC as well. He is so great.

I love the hospital here. They really understand what this experience does for the patient and the family. Yesterday morning, while I went to get breakfast, they had a harpist come in and play for Aiden while he slept - about an hour. They have activities that we can do together - I read to him, there is music therapy, massage therapy, and tons of stimulation for play. They are also great things for the parents. There are so many resources here and there is constantly someone wanting to get a drink or books - something to make me feel comfortable.

Aiden also had a blessing yesterday from elders that were provided by the hospital. The elder said the most amazing thing that I had not thought of - that the Lord put the doctors and the staff in this place and trust should be placed in them. Also, there are so many angels here for the children all the time. I instantly thought of the legions of angels who knew them not long ago and the many angels that I know loved Aiden before I even knew him. Once you realize that the Lord and his many angels are here among the children, you can really feel it strongly in every decision, every moment of care, every interaction.

I will try my best to keep this blog going. It is easy to sort through the facts of everything if I keep it current. Please keep Aiden in your prayers.