Prayer Request

Do you remember my dear friend Kim? You know, the one that made me be overcome with grief when I saw her at Joshua's viewing. The one that kept me sane during our long 7 week stay in the NICU. The one that I consider one of my best friends.

Well, her son Shaun is having his 2nd stage surgery (the hemi-fontan) to help reconstruct his heart tomorrow morning at 6:30am ET. Shaun (who also has HLHS) is just a few months older than Joshua was, and we had big plans for our boys to be friends. Shaun holds a special place in my heart and I can't wait to watch him grow and learn.

Will you please join me in praying for Shaun's surgery tomorrow? I know what it is like to send your baby off for a surgery. I know what it's like to be sick to your stomach the night before because the stress is overwhelming. I know what it's like to hand your baby over to a surgeon that you have only met a handful of times. I know what it's like to face the real possiblity that your baby may never return to you.

Please feel free to go to their site and sign the guestbook with words of encouragment, love, and support. I know Kim and her husband Jeremy would appreciate it.

Thank you dear friends for loving me and for loving Shaun, Kim, and Jeremy. 

Surgery Monday

We've talked to the cardiologist and the cardiac surgeon today.

We have decided that Joshua is simply not stable enough to make him wait another 2 or 3 weeks for the Glenn.

So, Monday morning Joshua is going to have either a shunt revision or they will clip the shunt.

I am praying that the surgeon will just be able to clip the shunt rather than have to do a shunt revision. The best way to describe a clipping of a shunt is this. Imagine a garden hose that is turned on. Now imagine stepping on that hose. The water still comes in at the same rate, but the water goes out of the hose at a much slower rate. If they clip the shunt, they pretty much are "stepping on the hose." It is a much more minor surgery than having a shunt revision. Bypass usually is not necessary. They will have to open his chest again, but it will not be left open again. In general it is a much easier procedure.

If they have to do a shunt revision, they will have to put him on the bypass machine. It is a much more serious procedure that will require completely taking the current shunt out and replacing it with a brand new one. Either way, they will have to open his chest completely again, but the clipping is less risky than the revision.

We will be transfered back to the PICU at Peyton Manning Children's Hospital tomorrow sometime. I'm hoping to meet with the surgeon one more time to get some of my questions answered.

Please be praying. I'm terrified of losing my baby. I'm clinging to my faith right now more than ever. Sweet Joshua is struggling to breathe and stay comfortable. There is nothing more miserable than for a mama to watch her baby suffer and be completely helpless.

I will update as we know more.

Seizures and plan of care

Joshua started having seizures tonight. The first one they let slide, but when he had a 2nd one, the nurse and doctors became very concerned.

From what I've been told there could be 3 possible causes to his seizures.

1. Meningitis- they did a spinal tap. Results will be back tonight. I'm highly doubting it will be meningitis.

2. Withdrawl- since he was on some major doses of heavy duty drugs yesteday and into this morning to keep him from pulling the vent out of his mouth, there is a small possibility that he could just be going through withdrawl. they gave him a breakthrough dose of morphine and another dose of methedone. So far, since he was given both, he has not had another seizure. I'm earnestly praying that this is the cause of the seizures.

3. Brain damage- there is a chance that when Joshua crashed on Monday, that his brain was deprived of oxygen. They are going to schedule an MRI first thing in the morning to check for brain damage. Hopefully we will have those results back by the end of the day tomorrow. Of course, brain damage is permenant.

I haven't had time to udpate also about our newest plan of care for Joshua. His surgeon is NOT at all happy with his O2 sats being as high as they are. For right now, they are not going to allow Joshua to have any PO feeds (feeds by mouth). They are going to "fatten him up" and get him ready for the Glenn (the 2nd stage surgery that was supposed to happen in February). They want to do the Glenn in the next 2-3 weeks. They are going to put him on breastmilk fortified with a formula that is already pre-digested so he doesn't even have to use calories to digest his food. We need him to grow as much as possible in the next few weeks. The G-tube has been cancelled until after his next open heart surgery.

I am literally hanging on by a thread at this point. I feel like every last ounce of sanity has been sucked out of me and I'm going crazy. I'm so exhausted that I feel like I'm living in some sort of crazy dream and that I'm going to wake up soon and it's going to be Monday morning and Joshua is going to go in for his G-tube and that we will be home in a week.

I've become paranoid of every cry, every movement, every twitch. I panic at every alarm that goes off, and every doctor that walks in the room. I'm in an ugly place mentally, emotionally, and physically. I don't know how to pray other than begging for the Holy Spirit to intercede on my behalf. I pray over and cry over Joshua every time I hold him.

Right now, I'm going to try to get some sleep. I'm sure it won't be long before another nightmare comes and interrupts my slumber and I awake to panic.

I will update as I know more. I truly appreciate your prayers. You are carrying my burden and I truly believe that is how I am still somewhat functioning and how Joshua is still here with us. Thank you.

Another Day

Today I am literally putting one foot in front of another and taking each minute as it comes.

I am exhausted and at my emotional limit again today.

Joshua is doing well. He is off the vent- a nice little surprise for us when we got here this morning.

Shane is still here with me, but going home tonight.

Our path was crossed with an amazing foundation who is going to help us out with some childcare costs. God is providing for our needs at the exact moment that we need it. I've had a few people ask how they can help us financially, and for as much as we could really use it, your money is also needed at foundations like this who have not hesitated to help us. Please go check out their website and if you feel led to donate so they can help families like ours, please do so. It is the least we can do to give back for the generosity and support we have received.

We talked to the doctor briefly today. She told us that the crash yesterday was from the shunt being too big. It will happen again. We will not be going home until we either have a shunt revision or the next stage surgery (The Glenn). They are talking about doing either one in the next few weeks. I'm still dealing with the implications of that information- another open heart surgery very soon, longer time here, continued living out of a suitcase.  There are so many questions that I need to ask regarding the surgery. I'm hoping the surgeon will come up again today so I can bombard him. My main concern is if it's safe to do the Glenn on an 8 lb baby.

Like I said earlier, today is another day. I'm thankful for God's provision and that Joshua is still here. I'm trusting in His purpose for his little life. I'm running on the prayers and support of friends and family who are praying for strength. I'm mourning and grieving not being able to come home in the next few days and I'm praying for Joshua to continue growing as we look at the very real possiblity of another surgery so soon. I'm running on empty, but taking it one moment at a time.