3 weeks later

It has been quite a summer, I know that my post op updates have been negligent and I do apologize for that. We moved just 5 days post surgery and it left us in a new home, with many things to do and no internet. My husband was kind enough to set me up today in his office at work so that I can come here and update you on the rest of our summer.

This morning during worship time in church, I was reminded how infinitely awesome our God is, how he can turn mourning to joy and how he deserves all of our praise and is times oldest healer, and greatest surgeons. The nights off sleeplessness are just now beginning to take their toll on Tim and I, the stress always hits us after it’s over and the same is true now just three weeks post surgery. Our summer was spent gearing up for the worst set of circumstances, filled with stress, heart ache, worries and anxiety and I am happy to report that the last three weeks can only be described as an answer to prayer. The surgery was successful; we anticipate years before any more interventions will be needed. The nightmares that shook our home the first few nights have all but disappeared and the pain is gone. Josh’s appetite has doubled; he’s eating more than he’s ever eaten before in his life. He is gaining energy and drive everyday and his emotional strength this time has been something of a surprise to me. He is so much stronger than I knew, and I have always known how strong he is. Just last week I bought him a scooter, and yesterday he went around the block on it twice! (this may be normal for most five year old but for Josh, who couldn’t walk to the park just one month ago this is a miracle!)

Kaleb took the entire separation in stride, he was cheerful, loving and compassionate through the entire ordeal and now, if you ask, he will tell you that you must be careful of Joshua’s ouchie and if Josh lets him he will pull up Josh’s shirt to show it you. It was the Kaper that worried me endlessly, I feared he would feel abandoned, left out, alone, hurt... instead he proved me wrong and proved to me what an incredible kid we have been blessed with. He is by far one of the most compassionate little men I know.

This week we even made it to the cottage for a few days and Josh was able to swim again. At one point, sitting in the water watching him and his brother playing I couldn’t help but think how fast the last three weeks have been. Josh is a different kid in many ways. He’s still recovering, he still tires easily and there are days when he wants nothing more than to veg out if we were to let him. We have a post op appointment this coming week to find out for sure how things look in his heart now that the swelling is down, and we are praying for great results. His scar, is healing, but what once caused him shame he now proudly boasts about. His scar is now his symbol for ‘No leaks’! His smiles are brighter than they have been in a year. Life has certainly changed in the Haughton house this past few weeks. God is indeed a good God.  No matter what happens in this life I have learned that there is nothing he can’t do, and there is indeed power in the prayers of his people.

I have said this before and I say it again. I have been so deeply moved and touched by the faithfulness of your prayers and support this past year. I give God all the credit for the miracles we are witnessing as a family, and I thank you for lifting Joshua and our family up before our maker. I felt those prayers, I know that Josh felt those prayers and the simple way that Kaleb dealt with all of this says to me that he also felt your prayers. We were caught up in a bubble of prayer and it has kept us safe and at peace through out the many months of waiting and worrying, and then the horrific week of surgery and moving. Thank you seems to weak a phrase for how we feel, we are so much more grateful than we can ever express. Not just those of you who showed support during the redforjosh campaign but all of you, every single person who stopped at some point to pray for us, either once or many times. All of you have made a difference in each of our lives. 

This is where the healing begins

We got through the surgery. There is a lot to be said about that, it's a triumph to be sure and we feel like we have scaled a mountain and are now on the other side. When we handed Josh to the OR team I immediately had two lines of a song going through my head, 'this is where the healing begins, this is where the healing starts' complete with the tune and everything. I just assumed it was a particular song that I have been listening to a lot lately and I was too tired to think much of it. However, this morning I still couldn't knock those two lines out of my head and I began to wonder what the other lyrics were so I turned to my phone and searched for the song I thought it was... but it wasn't that song. In fact it's not a song I own, and if I am honest I don't know that I have heard it before... yet, when I googled that song I found that there is indeed a song with those two lines, further, when I played it on youtube, it was the same tune. Funny that it doesn't say ' he is healed..' just 'this is where the healing BEGINS, this is where the healing STARTS'....

(the formatting is odd... having trouble with the ipad and too zonked to sort it out... sorry)

The surgery for the most part went well, he had the two valves replaced and there is NO LEAKS... he's never had that in his life before so I cant tell you how happy that makes me. They were also able to avoid the shunt to which I am most grateful. His pressure is good too and we found out that the valves they used are large enough now that they may be able to replace them in the catheterization lab if they reject; there is very good reason to hope that he may not need to see the inside of an OR for a long time (for open heart at least). All of this is good. All of this brings me great peace and comfort, and hope which is in short supply sometimes.

the actual recovery process isn't as great news as all the above. He had a collapsed lung, he is in a great deal of pain and even in his sleep he moans in pain. His breathing is shallow which is making him 'desat' *his O2 saturation levels get too low when he is taken of O2. He can't keep much down and spent all of last night throwing up, and again lost everything he put in. As I write this I am going on 19 hours with no sleep, and only 8 hours of sleep since Wednesday. Tired is an understatement. My plan, tonight, was to sleep for a bit right after his pain meds were given but his monitors and ventilator are alarming and thumping and his moaning... he just keeps moaning. There is nothing worse than not being able to help your child through this kind of pain. Pain so bad that he can't breathe, pain so bad that he hyperventilates and vomits. He's getting strong meds, but the older these kids are, the more surgeries they have, the more pain there is. It just seems so wrong and so unfair.

However, and this is a big however... This is where the healing begins, not ends. This is where the healing starts, not finishes. We have a road to travel, every day he will get a little bit stronger, he will keep fighting (he is truly a tough little fighter - even pulled out his own NG tube this morning and walked through his pain to take himself to the bathroom rather than pee in a diaper). There will be less pain every day, more sleep coming in the weeks ahead. I know you are all praying, we appreciate it and ask that you don't stop yet. We are exhausted and Josh needs us. Please pray that we find strength and rest even if we don't find sleep. Pray that the pain subsides and that Josh too can find rest, but more, that he finds hope, peace and a deeper knowledge of his own budding faith.

Today, as we were about to step out for dinner Josh was awake and needing a drink. I gave him a sip of water and told him I loved him, was proud of him and that there were people everywhere praying for him to feel better quickly. He looked up and said 'I know' so I asked 'what do you know,? That I love you or that people are praying?' and he said "I know that people are praying'. Then a friend came by, she wore her red shirt, Josh said 'She's praying for me'.

Will sign off for tonight... thanks for all the support. Will do my best to keep this updated as time allows.

Laurie