Prayer request for little boy with heart probems

[samuraidragon]

Hi, I am requsting prayers for family friend named Michael who is in ICU with heart problems. Michael was born with a hole in his heart that miraculously closed, and had a pacemaker installed. He is now 2 and a half and suffering heart failure. He had a new pacemaker installed, but the surgery almost killed him, he had to be resuscitated three times. His only chance to live is a heart and lung transplant, which are extremely difficult to perform on a toddler, and heart and lungs that are small enough for him are very rare. The medication he is on put him into a coma, and in an atempt to take him off of it required resuscitating again. I'll post an update if he's taken off the meds successfully.

P.S. Michael's mom just gave birth to their sixth baby, Tommy, and he was just diagnosed with Down Syndrome.

PLEASE PRAY!!!! Thank you so much!


EDIT: I just found out that reason for the complications are from the fact that the anatomy of his heart is reversed, like when you flip a picture on a horizontal plane.

[Rogie]

I'll definitely be praying for this poor child and his family. That's so unfortunate. Please keep us updated on his condition and on how his family is doing, especially his new baby brother with Down syndrome.

[Lynx]

i'll pray

[Syreth]

This is definately unfortunate. He's in my prayers - I hope they find a suitable heart and set of lungs for him. I'll also pray for the family, that they would be able to cope with this along with their new child.

[samuraidragon]

UPDATE: I just got an e-mail from Michael's parents with an update on his condition, here it is:

Marcy and I received a phone call at 2:40 AM telling us that Michael's heart had stopped yet again. By the time we got to his room (about 10 minutes) he was in a desperate situation. Every time they got his blood pressure back it would drop out again. After trying to revive him for about an hour they decided that the only way to keep Michael alive would be to put him on ECMO (extra-corporeal membranous oxygenation). This is similar to putting someone on a continuous heart-lung bypass machine. This involves putting large tubes into the right neck artery and vein to allow blood in and out of the body. The blood is passed through a machine to oxygenate it before it is returned.
This procedure also requires that michael be on blood thinners. As a result of this he developed bleeding into his lungs. This was due to abnormally high pressures in the left atrium. To remedy this one of the cardiologists did a procedure where they created a hole in the wall which separates the left and right atria. This has seemed to help the flow through the lungs. Since that time which was about noon on Tuesday Michael has stabilized.

He remains on ECMO and has actually done fairly well. They have allowed him to wake up and removed the paralytic medicine. This has actually been a nice thing for Marcy and I as we have seen some movement and response from Michael. I think one of the hard parts of all this is that he has been paralyzed and we have not seen any movement from Michael. He still remains incredibly sick. The efforts to save his life so far have been more than
heroic. And now after all he has been through, he still shows us that he is here and fighting like crazy. That strengthens us and allows us to proceed with a strong faith that he has survived for a reason and we are willing to do anything it takes to help him. Another nice thing that has happened is that our children have joined us here at the hospital. They were able to see Michael for a short time yesterday. I think that helps them to understand exactly what's going on with their brother.

So where do we go from here? Michael can remain on ECMO for about two weeks before the risks associated with it start to dramatically increase. Next week we hope to proceed with placement of a Berlin heart. This will allow his heart function to improve (it's a mechanical heart). At this point he will have to wait for a transplant. He is listed for a heart -lung transplant at this time. The difficulty is that this type of transplant can take up to 2 years to have an available organ block. A simple heart transplant typically takes only 1-2 months in comparison. Michael is not a simple heart transplant candidate due to his pulmonary hypertension. Thus, Michael is still fighting incredibly hard and he has some hope. He still needs prayers that he can get a berlin heart and a subsequent transplant.

Thank you for your prayers!!!!!

[Rogie]

Wow, so much for such a small child to go through. I'll continue to pray for him and his family. Your post also reminded me of something else: Let's also pray for his doctors in caring for him.

Thanks for the update, and please continue to keep us posted, samuraidragon.

[samuraidragon]

Here's the next weekly update (yes i posted the last one less than a week ago but my email server was down)

"Mikey continues to hang in there. He is still on ECMO as planned. He is scheduled to have his berlin heart placed on Wednesday. (vist berlinheart.com for more info on the artificial heart or more properly venticular assisit device).
The main problems for mike have been that he is requiring a high dose of sedation to keep him calm. He semi wakes up and then gets mad that he has all the tubes and accessories. As his parents this is the hardest part because we would love to rescue him. He occasionally even tries to talk which really becomes hard on us.
Today they changed him from a fentanyl drip to a dilaudid drip to see if he could have better sedation. We hope it works. Otherwise he continues to fight. We are hopeful he can stay stable 'til wednesday. Then the rollercoaster ride begins again. We thank all of you who think and pray for michael. We know that it helps. We also thank my work partners at Radiology assoc. who have picked up the slack in my absence. Our kids will be with us til probably saturday to allow them to be here during Michael's surgery on wednesday and a couple days after."

(speaking as myself) - The kids are at the hospital with them til next weekend. Marcy (Mike's mom) has asked for prayers for their family. The kids are grieving their little brother. This situation is very painful for them. Marcy has been concerned with the ways they are distracting from it. There are moments where it is very volatile. It brings up her own grief of missing the experiences with family that she has known and treasured. This is all a part of the grieving process. It is just such an adjustment and it is very felt. God is present, she knows, and she has asked that a prayer request go out for their family.

Thank you

[samuraidragon]

Michael's having his surgery today for the berlin heart. There are three outcomes...

• Surgeon unable to place device due to Michael's variant anatomy (heart turned to right side of body). This is a disaster as he would have no further options.

• Surgeon can place device but Michael's lungs don't oxygenate the
blood well due to stress/impact of surgery (Includes that he is placed on heart/lung bypass machine). This will require that he potentially remain on ECMO for hopefully a short period.

• Surgery goes well and Michael's lungs and new device work well, hopefully can get off ventilator in near future.

There are many potential risks in addition to above. Hopefully these won't surface.

[dragonshimmer]

I'll be praying.

[samuraidragon]

this is what a berlin heart looks like (a little smaller for children)

[Rogie]

Wow, that looks pretty scary. I hate this for the boy. Still praying, and thanks for updating regularly.

[samuraidragon]

Michael had his surgery today. The placement of his berlin heart went fairly well taking into account that it took about 7-8 hours to do everything required. He required a fair amount of blood during surgery. He was also able to get off of ECMO. His lungs during surgery were somewhat of a problem with poor oxygen transport.

However when he was taken off ECMO and allowed to fully utilize his berlin heart things got quite a bit better. Currently he remains on the ventilator but opens his eyes even more than what he's done previously. The immediate obstacle to overcome is the risk of bleeding tonight, there currently is no evidence to suggest any bleeding at this point. Then he needs to get him off the ventilator. That may take up to 1-2 weeks depending on Michael's strength. At that point he needs to get stronger and rehabilitate after this past ordeal prior to him getting an organ transplant.

There still may be a chance for just a heart transplant, but time will tell this.

[Tsukuyomi]

Oh no, poor baby. No baby deserves to go through anything like that. I'll keep him in my prayers. I hope he makes it through. I... I just hope he makes it through (sniffle).

[samuraidragon]

Michael seems to be recovering fairly well after placement of his berlin heart. He had some twitchinesss of his face and hands thursday Am.
There was some concern about a brain injury but a CT scan was ok and there wasn't any seizure activity on an EEG. The twitches seem to have significantly reduced, so we're not really worrying about them for now. On thursday evening Michael began more deliberate communication with the nurses. This contiued yesterday with us as well. He likes to hold hands, wants to be picked up, and knows which cartoons he wants to watch. He is continuing to work toward getting off the ventilator, hopefully in the next few days. His berlin heart is working great.
The hardest part is watching him come off of the seditives. He is having some withdrawls to the drugs that's hard to watch a 2 year old go through. I so want to rescue him and yet I can't. I often find myself thinking of Mary, and knowing she too wanted to save her son from His pain gives me some comfort and strength.
Thank you for your prayers!!!!!
Marcy

[samuraidragon]

[Rogie]

How pitiful that this child must go through so much, but thank the good Lord that Michael's making it through so well. Praise God for answering prayers.

Thanks a lot for continuing to update us, samuraidragon, and for the pic. It helps put things in even more perspective to be able to see the little guy.

[samuraidragon]

Michael's going off the ventilator today, i don't know how he'll do without it. If his lungs heal enough, than hopefully the presure on the arterys in his heart will decrease enough that he'll only need a heart transplant vs. a heart and lung.

[PigtailsJazz]

I'll be praying for him....but it's so amazing to read this and see how God is working in this family

[PigtailsJazz]

[samuraidragon]

i just got the first update in a while, here it is:

Michael has has lots of secretions in his lungs that he has been working on trying to cough up. To help this, usually a patient should get out of bed and change positions. Marcy and I were very happy to help,occasions as this meant that we could hold him. However on 3 separate occasions soon after he got onto our lap his oxygen levels dropped significantly. He then spent many hours doing several different therapies to try to get his oxygenation back up. Somewhat scary to us as it brought back memories of a couple weeks ago. Well we think the episodes may be related to some kind of kinking or malposition of the berlin heart tubes with the position change.

Yesterday Michael spent a fairly quiet day in bed with long visits with his brothers. His oxygen levels were stable all day. Since his main surgeon is out of town until Monday night, we don't expect many changes in his treatment plan, including moving him much. He slowly is getting stronger over the past two days. His voice is still weak and hoarse from having the tube in for three weeks. He's also still on a fair amount of narcotics but that is slowly being weaned as well. So everything is continuing to slowly get better.

We still pray for another few weeks of improvement and strengthening and then a repeat heart catch to reevaluate his pulmonary arteries. With continued prayer and medicine we hope that those pressures will be low enough to allow a heart transplant only. We again thank everyone for all of your support. We couldn't do this without all of you behind us!

[samuraidragon]

Michael is doing very well!! he's out of the ICU which is good news. He's on a feeding tube to ensure that he's getting sufficient amounts of food; otherwise, he's been sitting up on peoples laps and his doctor wants him to start walking around in the next few days. For now he just gets to lie low and get stronger for the next few weeks, until they check his heart again to make sure every things going well.

Praise God!!!

[Syreth]

That's awesome that the recovery is going smoothy. Great to hear! Thanks for updating us. Praise God indeed.

[Rogie]

That's wonderful news! Praise God! I'm glad to hear that he's doing much better.

[starstoryteller]

Satan must be threatened by this boy. God has great plans for him.

[samuraidragon]

Michael had some minor surgery today, to clear up some clots in his berlin heart. The surgery was short, and went great, he's doing fine. On the other hand, his mom is not doing very well. She's been staying with him everyday for the last few weeks, and is exhausted from lack of sleep. Another mom that is a good friend of ours is staying down there with Marcy to relieve her, but Michael isn't taking to her very well. On top of this Marcy has the 3mo old baby, Tommy, that she has to take care of. Please pray for Marcy as well, she really needs the strength to continue to be with Michael.

[samuraidragon]

Hello all, I haven't hadn't had any recent updates in a while, apparently the email updates just came today from the 11th, 19th, and the 24th of May. Maybe a little problem with their mail server?

Anyhoo, as I said two weeks ago Michael had a clot in the pump chamber which is on the artery side of his berlin heart which needed to be changed. That all went fine and the clot was removed.

Back to May 19th he was walking with assistance. He was becoming much more interactive playing with trainsets, blowing bubbles, and making jokes, while pitching balls to his surgeon, Dr. Gandhi who would hit them back with Michaels
little bat.

Michael was also about to have his first heart cath to recheck his pulmonary artery pressures, those things that are keeping Michael on the Heart/Lung list at the current time.
If you remember, the outcomes are basically three:
1) pressures are unchanged and Michael needs a heart/lung transplant (not the one we want)
2) His pressures are improved but not good enough to qualify for a heart transplant alone. Better than #1 but the best would be option #3 which is
3) pressures have reduced enough to list for a heart transplant alone.

Michael had his heart cath and was found to have NORMAL pulmonary artery pressures and resistance. This means he is now on the heart transplant list! He no longer needs a lung transplant!:grin::grin::grin:

However, two nights ago on the 23rd he had a fairly high fever (103+ at 11:00 today). He had had a lot of diarrhea as well so they hoped it was just a stomach flu or some viral illness. After blood cultures were taken it turned out Michael has a blood infection. He will need to have one of his pumps replaced and long term IV antibiotics to treat this.

Other then that, he seems to be holding up okay, he's still in physical therapy and hitting bubbles with his little bat!

Keep praying that this infection is just another bump in the road, and will turn out all right, like his lungs did! Thank you all.

[Jingo Jaden]

Oh dear, I will pray. Hope it turns out for the best.

[samuraidragon]

Michael's pump change and new central line placement went well yesterday. He'll now will stay on IV antibiotics to try and clear his infection. His fever seems to be down as well.
He's doing well and is still attending Physical Therapy. P.T. for him amounts to playing at the Thomas the Train table (he doesn't really know it but they're trying to get him to stand as much as possible to keep him moving toward walking). Also Becky the child life specialist will usually "hide" his wagon both before and after play time. Michael's job is to walk out and find it. It gets him walking about 40-50 feet with someone holding his hands for support.

The next step will be hopefully his transplant. As you know, only God knows when that can happen. Pray for a smooth period of time prior to it!

[samuraidragon]

A heart has been found for Michael!!!

So far every thing looks okay. There still is a small chance that the transplant could be cancelled at the last moment (as is with all transplants).

Please pray for the donor family!

[Syreth]

Wow, that is so cool to hear how these prayers have been answered over this month and a half or so. Praise God a heart was found for him!