Canaan Hesterman

Happy 9 month birthday mama’s angel/ daddy’s ‘tinker !

Our days just keep getting numbered and worse! In rounds yesterday the Dr asked me what my “realisitc expectations” of this hospital stay are and I said “to walk out of here with my kid alive and whatever means in between to do so”. They are starting the “quality of life” talks with us and the “how much is too much before you have to let go” conversations which we were totally not prepared for. We are shown chest x rays everyday and we’re told that they are permanently damaged and that it is so severe that they don’t think that what he will regrow with time will compensate for what is damaged. We were also told today that Canaan does not qualify for a heart/lung transplant because studies show that only 5% of kids with down syndrome live and that it’s usually only up to a year. They are setting up a care conference for us tomorrow with the pulmonary Dr, the cardiologist, and the ICU Dr to discuss what’s been done, it’s impact on Canaan’s immediate future, and what if anything can be done from here.

Miller’s mom, Hope, brought Miller to see his little brother yesterday and although we gingerly explained the situation to him he did great and was very tough. Miller even made his little brother a picture to put up on his wall saying that he loves him and to get well soon. Miller’s brother Korbin was also here and even though he didn’t get to see Canaan he made him some cards in the waiting room as well. Our besties Duane and Tina also spent the day with us and even took us out to dinner, we know that nothing can take away the pain but the temporary distraction of loving friends is appreciated in this difficult time. With that said the amazing Jen G came by today and the poor girl had to go through the worst of the news with us and I feel bad for her to have to see us break down like we did. Liz and Johnny from Home Depot also braved the traffic on 65, which we heard was horrendous, to be here with us today. To top it off my family is here my dad, Sarah, Sergio, and the kids.

Jen yelling to God

I would just like to put it out there that we DO NOT want or can even imagine a life without Canaan, and the thought is just killing us. We know that God can heal him and I told Canaan that they have science but we have God and I pray that it is in God’s will to heal him.

~Julie and John~

Canaan’s picc line got changed out today to a double lumen line, since he is on so many meds they needed more access to run them. It took 3 nurses and a respiratory therapist to transport him down to interventional radiology because of all the support he is on. The chest x ray had shown that while the left lung shows improvement overall his lungs are still extremely bad. I also  had a talk with Canaan’s pulmonary doctor today who said that right now we don’t know if Canaan is saying he can’t fight anymore or if he is saying that he just needs time and medical support to recoup so he wants to do a cardiac catheter to see the exact pressure in his heart. What they can do with the cardiac cath is to see if the condition reacts well to oxygen or nitric oxide and if so then there is hope for improvement but that if it does not respond then it will be considered a “poor prognosis” and they basically just let his body run down it’s course. The bad part is they cannot do the cardiac cath until they are able to get his lungs more stable, it is too risky of a procedure, but all the while “time” is not something we can risk either. In fact “time” seems to be the miracle drug it is their answer for everything but time is acting against us as well. I did bring up a heart/lung transplant half in jest and half seriously and the pulmonary Dr said that although a transplant process from beginning to end takes a long time, is hard to find for a child, and may be unrealistic that it has crossed his mind.

Today the attending Dr tried changing too many things too quickly like decreasing the blood pressure med, wean on vent, and turn down nitric oxide and it was too much for Canaan’s body his saturations dropped into the 50′s and they had to bag him for quite some time before being able to put him back on the vent, it was really frightening. He crashed pretty  hard and it’s always questionable if they’ll be able to get him stable again. The monitor not only shows a constant number with his saturations but it has a beep as well and the tone of the beep lowers or gets higher in conjunction with where the number is. So as soon as we hear the tone of that beep get deeper our stomachs sink and our hearts race and we just pray and pray while a team of people try everything they can think of to stabilize our baby. They are saying that some of his desaturations are in part to  his heart shunting the blood due to the hole (ASD).They went to plan B and put Canaan in the prone position (on his tummy) and he stayed stable for the remainder of the evening.

We did have some surprise visitors today my mom came down late last night and stayed until this evening and John had to go back home for work training yesterday but he was able to postpone it and surprised me by coming right back today. John’s parents and KaLesha also came to visit too. They all got to experience first hand the horror of watching Canaan go through the every day ups and downs of him fighting so hard for his life. It is always more comforting when family is here so we were really thankful for the time we got to spend with them and the company we’ve had thus far has made us laugh and brightened our spirits temporarily. In addition, some friends of mine from Home Depot stopped by, Sandra and Mike, and brought Canaan the cutest stuffed dinosaur.

I am actively working at every moment to fight back tears and feel sick to my stomach all the time and John as well. I was watching videos of Canaan that I had taken on my iPhone and I couldn’t take it I wanted to jump through the phone and just grab him. I bought him some new clothes to wear here and they sit there with the tags on them and I am nervous to even think about purchasing anything else for him because I don’t even know if he will come home with us. Never in a million years did I ever think I wouldn’t be bringing my precious baby boy home I had come to terms with living in and out of hospitals for a few years but NEVER did I imagine it would get to this point and I don’t like it. I know God can heal our baby so why isn’t he doing it, please please heal Canaan Lord please we beg you!

~Julie and John~

Nothing good to report today Canaan’s chest x ray had shown that the right side of his lungs looks better but the left side is now partially collapsed due to fluid and mucus plugs in his lung. His chest x rays show that his lungs are not just hyper inflated but hyper expanded as well so they are pushing down on his other organs causing more complications. The doctor told us today that a tracheotomy would not  have avoided this situation and won’t help with what is going on now. The tracheotomy is for an upper airway obstruction which is not the main concern, even with a breathing tube passing any airway issues it is not successful. We are told this is all due to his pulmonary hypertension and scarring of the lungs from chronic lung disease. They are also saying that because of all the medical support he is on that it will more than likely cause permanent damage to his lungs but that children grow new lung tissue until about the age of 2 so hopefully he can recover from some of the damage.

The Dr said today that Canaan is on the highest amount of support possible and all they can do at this point is to keep him there until his body decides to work properly or until it decides to not work at all. They made sure to emphasize that they are very unsure of what the future holds for Canaan and all we can do is hope for the best. The Dr told us Canaan has acute respiratory distress syndrome and were given a pamphlet and inside this pamphlet it boldly states that 30% of children with this die and the other 70% have life long problems…thanks guys that was very comforting.

John and I went to the Creation Cafe to eat but neither of us are really ever hungry, we eat more out of necessity than that of hunger. We have anxiety over just leaving Canaan’s side because we are terrified that when we walk away it will be the last time we see him alive.

Since we were told that although Canaan is stable for the moment they are not sure what tomorrow will bring so we are now welcoming those of you who are closest to Canaan and ourselves to come in an see him due to the severity of the situation. We had quite a few visitors today icluding the Cantwell 5, our minister and his wife David and Beth, the dynamic duo Tina and Imo, our Fase friends Kevin-Jen-Emma, and Canaan’s future in laws Jack and Angie. It was a whole church gathering in the parent lounge. It was really wonderful getting to be with everyone, to smile, and to laugh.

Karen                                                                          David and Beth

TIna and Imo                                                                         John and Tina

Angie and Jack

and standing in for the Fase family is the Mickey family

Today Canaan’s carbon dioxide is high and his oxygen is low and the right side of his lungs seem to be retaining more fluid. They are starting back up the chest percussion therapy on his right side and they but are having a difficult time keeping him consistently oxygenated. With Canaan they have to play the adjust settings and meds game all day every day, he likes to change his mind a lot. His blood pressure was also low today so they gave him a saline bolus, the resident was saying that with everything the try and change with him and the very little that works the one thing that does seem to persistently help is keeping his blood pressure up.

So the Dr came into Canaan’s room today and told John and I that  basically Canaan is “critically stable” meaning he is on the maximum amount of support possibly medically and with that support he is stable for the moment but if anything else should go wrong they are very limited in any other interventions. Man made technology is doing all the work for Canaan’s body and their plan B is putting him on his stomach to see if it will help, that’s our 21st century medical genius (not even joking). The other option that was brought up was an oscillator ventilator that can give up to 300 breaths per minute but they told us up front that it would just be a last ditch effort but would most likely not make a difference. It’s a real shock when they tell you that they’ll let you know when it gets to the point  you need to call in family.

Jennifer visited us today

We got to hang out with nurse Teresa today, Canaan’s angel in disguise. Teresa takes the time to really get to know Canaan and has become not only his nurse but a friend. I trust her opinion and judgement over a lot of the doctors and I feel most comfortable and confident when she is here taking care of him. There are a lot of sick children in this hospital and we are very lucky that God put her with us and in our lives. Just a little shout out to and outstanding person and nurse. Just a little shout out to an outstanding person and nurse.

~Julie and John~

Canaan has been the same today and they are just maintaining where he is at and we’re praying nothing else goes wrong. They had to start another IV for blood draws and start an arterial line to better monitor his blood pressure. He is on so many medications that they are having a hard time scheduling and working around them all so they are wanting to put in a double lumen picc line. Overnight last night his saturations dropped and had to be bagged with an ambu bag for a few minutes but they were able to get his sats back up. Throughout the day Canaan struggled to keep his saturations up and he wouldn’t go above 80% oxygenation up no matter what they did so they had to increase his vent settings.

My loving sister, Sarah, and my wonderful niece and nephew, Kayla and Nathan, had come down last night to see Canaan and she even got a hotel for all of us to stay in since John and I had not gotten a good nights sleep in the last few days. So then today we got to spend all day with them and it was extremely nice to have my sister and her kids here. We are so close and not getting to see them just tears me apart.

Throughout the day Canaan had some exceptionally stable moments so nurses urged us to get out and get some fresh air and to get away from the constant beeping of the monitors and the overall darkness. So John and I, with the help of Amanda and graciousness of Stephen, got to experience Gen Con a.k.a nerd fest, a huge nationally known gaming convention in Indy. Afterwards we met up with Sarah and the kids to get a bite to eat and run through the mall downtown which Kayla had been wanting to go to for quite some time.

~Julie and John~

Since maxing Canaan out on all his meds, sedations,and being on increased vent support he has been fairly stable today. He has had a few desaturations and his lungs are sounding a little “junky” but he is being closely monitored. He has had an increased heart rate implicating discomfort so they are trying to make small changes to see if those will help. All of his blood, urine, stool,and lung cultures have come back negative and there is no sign of infection. We had the GI doctor consult and he thinks it would be helpful to start Canaan back on 5ml every hour of formula, a very small amount, through the J tube for gut stimulation and once they are able to get him more stable they will look into doing a gastric emptying study and other things to diagnose his digestive problems. The GI doctor had also said that his liver seemed a little big but that is something to be more concerned about later considering the situation right now. A chest x ray had shown that his breathing tube (ET tube) was placed a little too high so they had to go back and lower the tube for proper placement.

Just looking at Canaan today instantly brings tears to our eyes the only way he could look more lifeless is if he was. He is so swollen and fluid over loaded the even whites of his eyes bulge, he cannot move an inch or blink so they have gel in his eyes to keep them moisturized, and the rhythmic motion of his chest is brought on only by a machine. It is disconcerting to have to rely on the technology of man to maintain his young life. What keeps us going is our obedience to God and the prayers of us and many others for Him to perform miracles on Canaan’s tiny body.

Our friend Amanda had put things into perspective for us this morning by saying that even though God is not immediately performing miracles on Canaan that it doesn’t mean He is not doing so in our lives. For instance Canaan is still here with us even after nearly losing him several times, Home Depot is retaining my position, the out pouring of ways people have helped us in various areas of our lives and Canaan’s hospitalizations. Also we couldn’t make it without all of the support from friends, family, and strangers alike. One of the biggest miracles is our families, our close friends, and our church family, there are no words to express the overwhelming feeling of how incredibly blessed we are…for reals yo! It is amazing how in all areas of our lives everyone has come together in our time of need for the singular cause of helping our family.

Canaan is now in a pulmonary hypertensive crisis, completely paralyzed, and basically in a medically induced coma. The immediate goal of right now is to keep him alive and worry about the rest later. Everything seems other worldly and so out of place, things just keep going from bad to worse. It’s so weird to even think about that they have a neurological sensor on his head to monitor brain activity vs sedation threshold.

He is retaining fluid and they have a hard time balancing having to give fluids for blood pressure and giving lasix to get off the extra fluid causing respiratory failure. He was also put back on the maximum amount of nitric oxide to help keep the pulmonary veins open that go to the lungs. Canaan was maxed out on not only the nitric oxide but also on all his meds and sedations and is on very high ventilator support and even after all of that he is still having desatruations. Any stimulation sends his body into a downward spiral so we can have very little interaction with him.

As soon as John got word of Canaan’s status he rushed here to be with us and will stay until Monday unless of course Canaan needs his daddy to stay here longer. Nana and Pawpaw Hesterman and Aunt KaLesha also drove 3 hours to be here because of the severity of his declining in the last 2 days. Although we appreciate all the love and support of everyone the doctors feel it best that Canaan not have many visitors or excess stimulation so we are limiting visitation to family only until further notice, thank you so much for all of your understanding.

Riley is also trying to get an ICU parent support group started so I was able to go to the first meeting of that group today, there was only one other mom there but once more parents know about it I think it will be a huge help. Also a very close friend of ours, Angie, was here today with her mom for an appointment for Angie’s daughter Laila. So they stopped by to say hi and let Laila see her future husband, Canaan, through the window of his room.

Laila, Canaan’s future wife

Nurse Teresa was back with us today and Canaan kept her on her toes the whole day. Later in the day Canaan’s saturations dropped below comfort level and he had to be bagged again with the ambu bag for a few minutes. They had also seen on the echo that his heart ventricles looked bigger so he had to be put on milrinone to help increase blood flow and making it so his heart doesn’t have to work quite so hard. As I had mentioned earlier in this post he is retaining fluid and is lasix dependent so he had to have a foley put in, which John cringes every time he thinks about.

~Julie and John~

Canaan had a bad night and even being on a ventilator they cannot keep his saturations up, even with a machine breathing for him they are struggling to keep him stable. The resident doctors were in his room all night long trying to adjust settings and medications frantically trying to keep him stable. There is now a nurse in his room at all times to closely monitor him and all of his equipment.

Throughout the morning Canaan’s blood pressure was dropping dangerously low so they had to give him boluses of saline and that would only work for a little while before his blood pressure would begin to plummet. By pumping him full of fluids his body, including his lungs, started retaining fluid and then caused even more difficulties with his oxygenation. Now no matter how much oxygen they try to put in his lungs it can’t completely get past all the fluid. So they had to start giving Canaan an as needed paralytic that would temporarily paralyze him, for about 45 min, until the sedation medication could take over and calm his body down. They also had to increase the rate and pressure (PIP and PEEP) on his ventilator because he was requiring more support.

What a trach piece looks like, the actual part that will go into his airway, although he will also have all of the blue and white tubing that you see him on in the pictures that get attached to this piece.

In rounds today they did say that if Canaan can get past all of this that he would not be able to go home without having a tracheotomy and more than likely vent support at home. Although at this point he is nowhere near stable enough to even think about another surgery. All day long Canaan struggled to keep a good balance between heart rate, blood pressure, and oxygen saturation. We were told that the trach is just a small part of trying to get Canaan better, the trach will only help with the minimal upper airway obstruction and what is going on now is a miriad of issues (cardiac, respiratory, genetic, metabolic) all combining to make one huge medical mystery. They are saying putting in the trach is a “long shot” but at this point we welcome the long shot. Canaan has basically scared us into proceeding with the trach or any other intervention needed. Our deciding factor is that if anything detrimental should happen at home at least we would have a way and an open airway to keep him oxygenated until an ambulance could get to our home, which is about 30 min from the nearest hospital.

Me, Nurse Erin, and Canaan

We were also so very grateful to have Canaan’s primary night nurse,Jill, with him through out last night and the nurse today was one of his “team” nurses from before,Erin, who also knows him very well. I know I’ve said it before but Canaan is such a complicated kid,medically, that you really have to get to know him as a patient to effectively treat him and having his consistent nursing team (Teresa, Jill, Erin, Stacy) is the biggest blessing. They really care about not only Canaan but John, Miller, and I as well and have become part of my hospital family.

Canaan also got an echo cardiogram and stomach ultrasound done today, the echo was unreadable because he has so much air in his chest they cannot get proper imaging of his heart and the stomach ultrasound looked normal for a child on a vent. Through out the evening they could not get Canaan’s blood pressure up, could not get his heart rate balanced, couldn’t get oxygenation under control, and he was needing more mechanical support so that they had to intervene with medication for the blood pressure and paralyze him, putting him into a medically induced coma, until they can get him more stable.

~Julie & John~

So today is Canaan’s terrible, horrible, no good, very bad day. It’s hard to even know where to start since Canaan’s health has been trending downward so fast. Canaan is on vapo therm high flow oxygen which usually his body needs for a few days and then he can be weaned back down to nasal cannula but this morning he had an episode where his blood oxygen level went down into the 20′s (suppose to be 90 or above) and they struggled to get him back up. They increased his rate and flow on vapo therm to 12 at 100% oxygen, which is higher than they’ve ever had him on and through out the day his saturations would drop into the 60′s and would not go back above 80. To try and calm him down they gave him different sedation medications, anxiety medication, pain medication and nothing helped. I literally couldn’t leave his side because his body just would not stay oxygenated properly and every moment was a critical one. The nurses and doctors were in his room all day, he took all the attention of the PICU.

My friend Amanda who lives here in Indy, that I’ve mentioned in previous posts, had come in to be here with me since Canaan has been spiraling down hill and while she was here I ran to take a 5 min shower (which is in the parent lounge right down the hall) and in those very few min she texted me saying Canaan was getting worse and that I needed to come right back. I jumped out of the shower, threw some clothes on, and ran back to a room full of 8 people including nurses, doctors, and respiratory therapists. Canaan’s saturations were still dropping even on the high amount of vapo therm so they decided to move to c pap , which is continuous positive airway pressure that is used to improve the ability of the lungs to exchange oxygen and carbon dioxide and to decrease the work of breathing. The attending PICU doctor that is on staff this week is great and he is giving Canaan every chance he can to succeed without invasive intervention. Since c pap has so much pressure they have to sedate so the child is able to tolerate it and even with additional sedation Canaan was still upset, clamping down, and dropping his sats. When I write clamping down it is not only his airway but also the arteries and veins in his lungs (laryngomalacia and bronchomalacia).

They drew some labs from Canaan to discover his hemoglobin had gotten lower and his carbon dioxide was high so they had to give another blood transfusion (which was still mommy’s blood from the direct donation) and had to make the difficult decision to reintubate him. Intubation is always nerve wrecking and alarming, it takes a lot of people, a lot of organization, and a lot of composure. Canaan also had to be bagged by ambu bag (resuscitation bag) until they got the tube placed properly and hooked up to the ventilator. Along the way today Canaan also had the GI doctors in to see him, surgery saw him for follow up on his hirschprungs surgery and him having prolapse, a chest x ray, a KUB stomach x ray, and taken off feeds to be put on IV fluids. They also took blood cultures,urine and stool, and lung cultures to see if he has some sort of underlying infection. We are terrified because this is not a curable illness that we can just throw medicine at him and fix him like pneumonia this is his body shutting down sick and the keeping him stable game.

Luckily we had Canaan’s primary nurse,Teresa, today and she is just amazing, she is such a blessing to us and to Canaan’s treatment and health.

~Julie & John~

Canaan had been having a rough few days but this morning around 7am he got upset and his saturations started dropping into the 60′s (they want him above 90) and he was turning blue and lethargic. They couldn’t get him back up even with increased oxygen and increased methadone and ativan so they did a cart call, needing immediate intervention, and sent him back to the PICU for respiratory distress and to be put on high flow oxygen vapo therm. The doctor that came for the cart call and the doctor that was in PICU when Canaan got there both have seen him in the last few weeks and know him very well which was a relief for me one because they are two doctors I trust,like, and respect and two because it’s a nightmare when a new doctor sees Canaan and knows nothing about him since he is such a complicated kid.

Throughout the day Canaan had two more bad episodes of desaturations and had to be put on a higher rate of vapo therm that he’s ever been on. Canaan would also not calm down so he had to be given some sedatives and pain meds to get him to relax. He also had a chest x ray to make sure he did not have pneumonia again or anything to be newly concerned about. Even when he was in between his getting upset episodes he was still working very hard to breathe and retracting.

infant silly bands

My beautiful friend, Amanda, came up to the hospital to be with me since Canaan wasn’t doing great and I got to get out of the hospital when we went for a quick lunch at my favorite place to eat in Indy, The Creation Cafe. When Canaan’s health is trending downward I don’t like to leave him for too long but it was a much needed break.

Creation Cafe

this is my sad face, can you tell?

Also I am very excited that the nurses that had signed up to be on Canaan’s team in the PICU before were able to get him back. We just fell in love with the nurses on Canaan’s team and having them here to take care of Canaan is such a huge blessing.  All of PICU north at Riley is great as well though the other nurses not on his team, the respiratory therapists, the techs, the PSA’s, and the managers. Not to say that the pulmonary pediatric floor isn’t great as well we’ve just spent the majority of our time in PICU.

Julie and John