Grant's Journey

As my sweet friend Robbie put it, post surgery home life is B.U.S.Y. Sheesh. Sorry for those who have been wondering if we are alive. Our first night home was AWFUL and honestly, yesterday wasn't much better. I have to give the kid a break, he is only 10 days past open heart surgery, and on top of all that, he has two molars coming in. Ouch. Grant has been very clingy and very insecure. He has developed this whiny screech the moment I am not directly touching him and he refuses to sleep unless I am in his bed, Daddy is right next to us, and he is sleeping upright while leaning against me. He moans and cries out in his sleep like he is fighting off some lab tech. It honestly has broken my heart and it makes me wonder if we have traumatized him for life. It is a really good thing that he won't remember this and eventually, time will fade the memories for Kyle and I too. Now before that sounds incredibly depressing, here is the good stuff. He finally got things moving in the bowel...

It's true. I almost don't believe it myself. After yet another AWFUL night (Grant screaming most of the night after people kept coming in to bug him... I even lost it and was bawling after we had a third blood draw of the morning due to the sample clotting off) I just about sprinted out the door. I had my mind made up before the doctors even rounded that we were done being there with a miserable two year old. His spirits are broken and he is hysterical when anyone walks by. Luckily, the CT team agreed with me and we got our discharge papers! I thought we would have to stay local to keep current on labs and X ray, but we agreed to take him to our doctor here, call Bonnie every few days, and be back next week. I am still worried about effusions, but since he is still not pooping, he is also refusing to drink and eat much. We won't know if he is going to have a pleural effusion until he starts drinking and eating, so it is a vicious cycle. I agree that getting out of there is ...

. . .Discharged . . . HOME! (now I will let Allison get to the real post since I am sure you are all dying to know the details. :-)

This is pretty much the face we have had all day. Miserable, but really wanting to have a good time. The real miracle today is that Dad is doing the posting. Yes, it has been quite a while since I have done a post. I just hope that I can do justice for all those that like all the detail that Allison usually includes. I woke up this morning to a text message from Allison at 7:15 that read "I am ready when you are." At that point I was awake, but barely. I slept in longer than usual because my body was catching up from the previous night. Figuring Allison had as terrible of a night as I did, I jumped right up and got the shower. When I arrived I made it a point to ask our nurse how the Grant's night went before going in so I would know what to expect. Lets face it, anything could have happened! She said Grant slept but Allison did not. I thought that was interesting. If Grant really slept, so should have Allison. I knew at this point her first words to me weren't pred...

I apologize to all who have been checking in today. It has been very busy! We did finally make it to the floor last night (YAY!) and it was a long day. As is typical of most kids after surgery, it has taken several days to get Grant's bowels moving again and that kept us in the ICU a little longer just to watch and be safe. Grant's tummy was pretty distended and with his history, that is never a good thing. We eventually determined that we would rather move to the floor and hope that a private quiet room would be just the trick for rest and recovery. Unfortunately the rest part of that is not really happening though not just due to hospital life with nurses getting vitals, meds that have to be taken, and stupid chest x rays that are completed between 4-6 am. Grant has finally had enough and he is just showing us that he does not want to do this anymore. He has been really uncomfortable all day with his backed up gut and he is too weak to stand and play much. In reality, he has ...

He's BACK!! Finally. I know I sound fairly depressed this week, but today has been so good for both Kyle and I. They pulled Grant's two remaining chest tubes this morning even though he still isn't holding much down. The thought was that after getting pumped full of IV fluids yesterday, he was still fluid positive even with his maxed out diuretics (meaning there was more that went in than come out). The x-ray this morning showed no effusions (fluid buildup in his chest...very common post Fontan) despite being fluid positive and so the tubes got pulled. They will watch him closely in the next few days to make sure that he can eat and keep things down without developing We are just so excited to see signs of Grant returning. When I (Kyle) walked in Grant immediately lifted his free hand and waved hello. It has been a really enjoyable morning with our sweet boy. He is crying again and back to his feisty self which we really have missed in the last few days. Back to the medic...

Listless. Blah. Spaced out. These are the words that would describe our afternoon and evening. You can see it in the pictures. Our day has continued about the same. Lots of puke and a little boy who can't get comfortable, and who quite frankly is still so neurologically out of it that he doesn't seem to care. I was getting a little concerned about his lack of care and the attending came and did a neuro assessment to make sure that he hadn't had a stroke. Thankfully no... we have all come to the conclusion that Grant has just given up his fight and is so overly exhausted that he appears to be in a permanent daze. He slept for about an hour today total and so they are ordering him some melatonin to see if they can knock him out without using narcotics. You can see what I mean. He hasn't cried once today. He hasn't even made a peep. He was entertained by the movie on the iPad for a little while and we tried using Facetime to talk to Grandma which was pretty cool. I tri...

One step forward, two steps back seems to be the motto of the day today. We felt so good yesterday after a nice quiet and peaceful afternoon and Grant was starting to finally relax a little bit. After shift change last night, he started puking quite a bit and when we left at 11pm he was finally resting again. The hope is that he is puking in relation to the attempt to switch I'm to Loratab and not something heart or gut related. They have ordered an echo today to check out his heart and also got a KUB Xray to check on his stomach. I threw a bit of a mommy tantrum today because in the early morning hours they moved Grant into the open bed area and we were back in stinking bed three where is it noisy and the medicine drop is constantly making huge noises. I am fine with Grant being doubled up on nursing care today, but I was NOT ok with him not being able to be in a place where he could rest. He was up all night puking and has had an awful morning. His heart rate has been back around...

Notice anything different? Look right at the middle of his stomach.... ok, I don't really expect you to see it, but Grant is down a right atrial line AND a chest tube!! I guess I will have to learn to never trust what happens in rounds. Grant got mighty feisty this morning and yanked out his RA line a few inches (not good... it was even sutured to his stomach!) and started to get that chest tube as well. Unfortunately, it was the one with the most drainage today, but it needed to go. The RA line was a little tricky to pull because it was getting snagged on something (perhaps a pacer wire?) internally and would NOT pull out. They had to call the surgeon to come in and evaluate since if it broke in the process of getting pulled, they would have to open him back up and go fishing. Yuck. Luckily, they pulled it and then watched for increased bleeding. After that, they came back a few hours later and told us that Burch decided to pull his middle chest tube regardless of the drainage be...

Thank you for all of the kid and supportive comments. Yesterday was hard. We stayed here till a little past midnight trying to offer comfort and finally went back exhausted to our quaint little Ronald McDonald House room. We knew Grant was in great heands and so we got some sleep and took a few minutes to breath. A long shower this morning had me feeling a little better about facing the day and we got back to Grant around 8:30 this morning. Your prayers are being answered and he is actually starting to focus on us a little more. We walked in and he was faintly moaning "mama" which of course melted me. We brought his sippy cups in this morning hoping that he might be conscious enough to start drinking. He was so excited to see HIS milk sippy and he finished off the whole thing in about 3 minutes. Just taking a big drink exhausted him and he has been sleeping well for the last hour. In rounds this morning, they decided to pull his arterial line because he is such a high infecti...

This has been harder than I thought today. I will be the first to admit that today has been pretty miserable...for all of us! Grant is miserable. I can't say that I blame him though. He is still really incoherent and trying to fight through to wake up, but really it just results in him sitting up, kicking, realizing that it all hurts, trying to move, realizing that hurts, and still doing it all over again. It is a vicious cycle. Grant has been on scheduled pain meds every two hours and it is almost as if they last about 15 minutes before he is agitated and fighting us again. Seeing him so uncomfortable and mad, but still completely unaware of where he is and who is there has been awful. I have been a crying mess today because there is simply nothing that we as parents can do to comfort him and that is not easy. I am surprised that he is still so out of it, but he is really drugged which is good. I don't think that he is in constant pain, but it is definitely like the lights ar...

Last night, Grant's rhythm issues started to even out, but it became apparent that the more he "woke up" from his anesthesia and sedation drugs, the more likely he was to yank out his breathing tube on his own. They started spontaneous trials around 6 pm and he was extubated just before shift change last night. He is currently on 3 liters of oxygen in his nasal cannula. In the last 14 hours, the real game has been trying to find the right balance in pain meds and sedation meds. He is still trying to come out of his medicine induced fog and about once every 40 minutes he tries to sit up, stand up, flip over, and just lets us all know how ticked he is! We have one of our absolute favorite ICU nurses on this morning (thanks Michelle!) and she just laughs. She keeps telling the nurse next door that she has given him enough meds to knock out and elephant and yet he still is fighting! It takes all three of us to hold him and keep him from hurting himself. Apparently when all t...

**Warning: These pictures are not fun to see and you should probably skip the post if you don't want to see what a toddler looks like in the hours following heart surgery.* This is a lot of posts for one day, that is for sure! Here are a few pictures of sweet little Grant. We got to see him about an hour ago and are quietly sitting at the bedside now. He pulled a few stunts leaving the O.R. and slipped into "junctional tachycardia". Abnormal heart rhythms are fairly common with post Fontan kids (and Grant has a history of post operative tachycardia) , so it is not terribly concerning right now. Grant has some small pacer wires directly in his heart following the surgery which have been used a few times to pace his heart back into a normal sinus rhythm. He has been completely sedated, but he is really agitated and his heart rate and blood pressures are all over the place. Because of his relative instability, they are not going to attempt to extubate today and hopefully he...

At 6 hours on the dot, Dr. Burch arrived to let us know that his portion of the surgery was complete. Whew! In all respects, Grant behaved himself and things appear to have gone very well. Dr. Burch said that when he was inside his heart, he was able to see that he would need a longer gortex conduit than initially expected in order to not compress Grant's complex Pulmonary Vein Return. Essentially, the goal of the Fontan is to connect the Inferior Vena Cava (the major blood supplier to the lower half of the body) into the heart through the Pulmonary Artery which allows Grant to have better blood flow and oxygenation overall. The IVC is sewn into a gortex shunt that then comes up over the outside of the heart and over the pulmonary veins to connect in at the top of the pulmonary artery branch. Dr. Burch was able to place a 20mm size shunt (it looks HUGE compared to the size of his BT shunt from birth!!) which is pretty big for his body size and should allow his body to grow without...

Kyle just got a call from Bonnie. Grant is successfully off bypass (thank goodness!!). Dr. Burch is finishing up the surgery and we hope that he will be out to talk to us in about an hour, though Grant will not be out of the OR for a while longer still. We weren't able to get checked directly into our RMH (Ronald McDonald House) room yet, but we did go and check in and get our keys and the house is absolutely charming! Eventually we will take a picture of the house which was converted from an old bed and breakfast.

We just got our second call. Bonnie let us know that Grant is officially on bypass. This part always makes me cry. I just really don't like the idea that my son's heart is not beating right now. :( We are doubling our prayers right now as this is where the bulk of the surgery takes place. In good news, we just got a call at Ronald McDonald and a room in house 3 opened up! Thanks for those prayers. We are on our way to go check in there right now and we will wait for our next call which should be around noon.

We got Grant to the hospital at 6 am and had a good long chat with his surgeon Dr. Burch . Dr. Burch is planning on trying to do an extra cardiac Fontan and making modifications to that by extending the length on the conduit that they are sewing from his inferior vena cava to his heart. (that probably sounds like medical jargon to most, so you can click on the link on the right had side bar to learn about the details of this surgery). We anticipate the surgery taking around 6 hours. At 8:45 we got our first call from Bonnie (the cardiac thorasic NP) letting us know that the lines were all in and Dr. Burch was making Grant's incision. We should have another update around 10:30 letting us know what's happening. Ronald McDonald house is full currently, so we have to wait and call back in at 11 am to see if anyone has checked out. If not, we will stay here at the hotel another night and try to get in again tomorrow. Anyone have any funny stories today? We could use some good distra...

Day two is now under our belts and thank heavens for that! Everything went smoothly at the hospital this morning. I was not surprised in the least to learn that we had a prescription for an EKG added at the last moment and of course no one knew who was supposed to do that since the hospital runs on limited staffing on Sundays. Four departments later, we finally found someone to administer an EKG and the rest of the tests were as smooth as we could have expected. We were able to attend church at the hospital branch in between tests (a 30 minute sacrament meeting where the spirit is so strong you can't help but be moved!) and made it back to the hotel in time for naps! We took advantage of our last day of "freedom" to explore Ft. Douglas, an old military barrack right next to the hospital. The whole area is a historical district and has been preserved and restored (it was the sight of the Olympic Village for the 2002 Olympics). I was glad to let Grant run and explore knowi...

I have to begin by saying that this last week has been one of the most humbling experiences we have had in the last several years. I remember just before Grant was born and it seemed that everything around us was falling apart...jobs, insurance, etc., but then in the last few moments it all fell into place. I don't think that these things are mere coincidence by any means and I credit each of these individual blessings to a Heavenly Father who is very much aware of our family and what we need when we need it. This week has been a reminder of God's hand in our lives once again. Allow me to share a few of the experiences this week that I believe to have been a direct blessing from all of those prayers offered in our behalf. 1. The Ipad. I smile just typing that. I don't think that I will ever be able to express my thanks and gratitude to the many wonderful friends who contributed to make this a reality. Several weeks ago, my friend Jane called me and told me that she wanted t...

Dear friends of Kyle, Alli, & Grant, YOU DID IT! In a mere 5 days (or whatever it was) you were able to get enough money for an iPad and then some! We are so overwhelmed by the generosity that you have shown and wanted to thank you for helping us help the Hicken's whom we all love so much. The button is going to stay where it is for a little bit longer, so if you missed out and would like to donate something to help with their medical bills and the many other expenses that they will be incurring during this little "road trip" of theirs, feel free! Know that you've made this road a little easier for some of our dearest and most deserving friends. Let's all keep Grant, his parents, and his doctors in our thoughts and prayers over the next week. We'll hand you back to Alli and Kyle for their regular blog posts now, but thank you again from the bottom of all of our hearts. Devony George Wilson Kristi Bates Hill Jane Price Johnson Kristen Mortensen

Time is ticking down. One week from today is surgery day. In a mere five days (four now since it is so late tonight!) we will make the long drive down to Salt Lake to be ready for the day of Pre Op testing on Sunday. It is funny the little things that set me off. In church last Sunday, I was talking to a great young man in our ward (congregation) who will be leaving for a two year LDS mission this month. He told me that he looked at the calendar on May 1st and got really nervous because this was May.... "My Month" as he called it. I couldn't agree more. May is our month and now that it is here, I can't help but wish that the days would slow down a little bit! I mixed a new two week supply of Grant's daily antibiotic and realized that it would expire after surgery, and I cried. I bought milk that expired on May 16th and I cried. You get the picture. This week is full of last minute preparations. I am packing, pulling out toys that have been hidden away for this p...

Hello Friends! Alli, Kyle & Grant's friends sneaking on their blog again to post an update! We're halfway there with our fundraising! We are so grateful for the generous donations from friends and family. It has brought tears to our eyes to see the sacrifices you're making. I am sure Alli, Kyle, and Grant will feel it even more so. Keep 'em coming! We're hoping to get the iPad to Alli, Kyle, and Grant by the end of the week! The donate button is on the right hand side of the blog or in the post below.

*Disclaimer: This post was not written by Alli or Kyle or Grant, and may or may not be approved of by them :) We, the friends of Alli, Kyle, and Grant, approve of this message, and you should too! Dear Friends of Alli and Kyle, and especially of Grant , As you know, Alli and Kyle's adorable little guy Grant is scheduled for his Fontan Surgery in a less than 2 weeks. During his pre-surgery heart cath a few weeks ago, Kyle and Alli got a taste of what recovery might be like with this next operation. Surgery with an active toddler is very different than surgery with a baby and this one has proven to be especially difficult. As friends of Alli, Kyle, and Grant, we want to invite their larger "support" group to make a difference! Kyle and Alli have talked about keeping Grant occupied during his recovery as his mobility is decreased and he will likely be in a little hospital room for weeks, and stuck at home for months afterward. While a laptop can provide some...