Sunday, February 15, 2009

Sunday update

Quick catch up for those who might not know. Our son Jacob has been dealing with stomach issues for month now. He is also a T1 diabetic. It's been difficult to try to tease out the cause. This past week he began vomiting with a total lack of appetite and we assumed it was this horrible virus passing through our community. By late last week it had gotten so bad his endocrinologist recommended a trip to emerg so that we could have his abdomen examined - local hospital sent us to the major hospital and I drove Jake to Saint John.

They had a bed waiting for us in emerg and we spent the next 9 hours being poked, prodded and interviewed by a plethora of talented doctors and nurses. We had brought The Hobbit to read and we were quite content until about 7:00 p.m. - then we got a bit squirrley and really wanted the bed in paeds that they told us about around 5:00. Listening to the swirl of people and the sickness of those around us reminded us that things could be a lot worse.

Jacob's pain wasn't in the right spots and his tolerance was extraordinary. He is one brave, strong boy. Unfortunately this actually got in his way for a diagnosis. They decided to place him in PICU so that they could monitor his BSL as he was on dextrose and insulin drips and fine tuning that ratio wasn't easy. It gave me so much more peace to know that the nurse was immediately there to care for his every need as low BSL at staff change could have been very difficult for both Jake & I. So we kept following the story of the 14 on their search for treasure and watched a couple of movies. (Underdog gets a surprising thumbs up from me and Nim's Island - although I truly wanted to love this film was sappy and so disappointing). X-rays, ultrasounds and bloodwork broke up the monotony and other than Jake's unquenchable thirst we were able to make the most of our time together.

These times for Jake & I are sacred and although they are many times filled pain and fear I truly wouldn't trade them for the world. I only wish the Ali & Keith could share them with us.

The sleep I was able to get was deep and restful. I felt bouyed up by your prayers and rested in the knowledge that we were in the right place and the best of care. I am so grateful for socialized medicine. Not once in this whole time have we had to fear the cost of a test, the length of stay or the stress of an upcoming bill (and this one would be a whopper). It is a generous system and full of grace. Doctors are available and present and treated us like patients instead of paychecks. He has had over a dozen on his case and all are stellar in their care and keeping of our son.

When Jake's white blood cells started to show toxic granules the newest surgeon called in knew that it was time to schedule an appendectimy with deep assurance that if it wasn't his appendix that he had the skill and knowledge to find out what was causing the pain and fix it at the same time. Jacob now affectionately refers to his incision as his "scarth" - in honor of his surgeon Dr. Scarth :D (his anesteciologist was Dr. Nice!) .

I had assured Keith that it would be silly for him to drive up that night as it was going to be a late surgery (10:45 pm) and Jake would be out of it. I never even thought that I might need the support while he was in surgery. Sitting there alone was one of the dumbest things I have ever done. I have an amazing community who would have been there at the drop of the hat, but my only concern was Jake. I don't think I'll ever do that again. It was supposed to be a one hour surgery - so as it passed 12:01 I phoned Keith to wish him a Happy Valentines Day and told him how dumb I was to have put aside his offer to be at my side. I said he needed to talk to me until I saw someone (the whole surgery wing was EMPTY - echos - no foot steps, no other staff - just me. The kind nurse showed me where they kept the heated blankets - oh what a gift they were) because I could feel myself getting a bit frantic and panic was about to set in. I literally saw myself walking down to the surgery room just to peek in the window to assure myself he was still breathing. He was and it was only moments later that they wheeled him into recovery.

The surgeon said that the appendix was exactly where he was having his pain - below his belly button - and it was perforated and had abcessed and the infection was so vile it made a few of them wretch. He told me that as long as they can keep his sugars maintained and infection at bay he would be fine. If not he explained the full course of what horrible things could go wrong (that was the worst time to actually be alone...). Because he's T1 healing isn't always as normal as it is for others. So he's still on his Dextrose/Insulin drips, NO liquids and it could be up to three days.

My son told me yesterday that he was so thirsty that he would drink the toilet water. He begged for ice chips and I finally talked the surgeon into letting him have a very monitored amount. They explained that when the bowel is touched is shuts down. Nothing moves down - and everything is forced up. If he began vomiting life would not be much fun (and he told me there have been patients who actually did drink out of the toilet). He okay'd a few ice chips and Jacob literally cheered. Watching unmet thirst is excruciating. Even when you know it's for their own good.

We looked forward to seeing Dad & Ali and being together again. It was such incredible timing for Keith to be the one caring for Jake this past 24 hours. Dads are so very different than moms. They made a game out of the post-op exercises and he encouraged Jake to recovery that I would have coddled him through. The before bed phone call I had with them last night told me of incredible progress - new breathing exercises because he had blown past the original ones, he had been up, mobile, used the toilet, brushed his teeth and his hair, washed his face at the sink and progressed much farther than the PICU nurse had ever expected. What a relief. I was able to sink into my own bed knowing that I was going to wake up, drink my own coffee (Tim Hortons coffee is way over-rated... but still better than "hospital coffee", so I will try to refrain from complaining) and shower in my own bathroom and head to my church filled with loved ones and a community of deep caring. I was also going to get a chance to put some of this process down here. Not having the ability to type all of this out was bothersome to me. I am truly overwhelmed and blessed by the level of prayers, support and messages we have received. I only wish I had time to read and respond to each one today.

Alinea and I stopped at the grocery on the way home and purched everything we needed to make steak salads together and came home to cook and watch movies. Unfortunately mommie was WAY more tired than she knew and fell asleep at the end of the first. We decided to pass on the second and talked and cried together instead. It was so good to bond with her again and reassure her of my deep love. This has been so hard on her too. I tried to tell her that time didn't equal love, although it sure looks like that sometimes. I told her that it's not like there is one love pie, and the more Jake gets the less she gets - I said "You get your own pie, I love you totally and completely and wholly just for you, and Jake gets his own love pie too - his pieces don't make yours smaller." I hope she knows how deeply I miss her and how much I adore her.

Today I will be headed back north to switch with Keith. I've packed a little picnic for us to share together before he goes. I deeply miss him too. The psychic toll this takes on him is pretty extreme. I know that this too shall pass and we will all be together again soon. We should have a better estimate on recovery time this morning when they are able to see how Jake is progressing. They left a vent in (I call it his Purple Heart) - a little drain so that the fluids can get out and not create another abcess. Once that dries up and his bowel begins to do its job again the next hurdle will be the reintroduction of fluids and eventually solids. The ease with which his BSL have been maintained while on the IV drip has been a wonderful vacation from that stress. Real life will begin to kick in again and counting carbs, calculating insulin doses and maintaining his levels will soon be our responsibility again. I am not looking forward to that, especially if he is having any trouble keeping food down. Doing this transition in hospital instead of at home will be a good thing, not the easiest on the family, but important so that we know that his recovery is full.

Coolest connection in the middle of difficulty. I came home to see a prayer request from church that mentioned the hospital - one of my blogger friends from before moving out east - the Naked Pastor - David Hayward - (who lives in Rothesay) son, Jesse is also at SJRH and Keith was able to connect with them last night to give that mutual hospital support that only those going through similar circumstances seem to be able to understand. I look forward to connecting with he and Lisa (and Jesse) today. While you're praying for Jake, could you mention Jesse. He's a university student and is struggling with an undiagnosed illness and his appetite is non-existent and he's quite ill. Amazing family and a joy to be able to connect f2f since moving to NB.

Again, thank you all for praying and supporting us. We can tell. It's always the time when moving away from family that we feel it most deeply. Being surrounded by such an incredible amount of support and love makes all the difference. God bless you all!


wilsonian said...

SO glad to get the update!! Thank you for taking the time out to do this. Continuing to pray, and continuing to give thanks for everything that's going right.

Love you

Hope said...

So so glad for the update, too!
I'll read it all to dearest one who,I'm sure, will shudder. He knows how serious this all can be.
You sound good.
Hang in there.
Love you.

NoVA Dad said...

I hope that he is out of the hospital soon and the whole family is reuinted. Times like this can be difficult, but it sounds like you have all been blessed with a fantastic hospital staff.

Danielle said...

Thanks for the update, heidi! so glad that jake had his surgery & came through it without complications...I'll be praying for a speedy recovery for him & that your family can reconnect & enjoy one another's company again soon ( :

Candy said...

I've been keeping up on facebook but I'm glad I thought to come here. Great update. We prayed for Jake today at my ladie's bible class. Trust me - those women will not forget him. They are prayer warriors.

Heidi Renee said...

Thank you all - it means so much to me to have your support through this, it's been excruciating and we're not through the woods yet.