Tommy got his new heart!!!

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Janet,

Certainly appreciate the update on Tommy. Glad he is on the road to recovery. Thoughts/prayers for a continued SUCCESSFUL recovery!



Cort | 35swm | "Mr Monte Carlo"."Mr Road Trip" | pig valve.pacemaker ...RT 66 = Sept 5-16, '09
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"Live right now" ... Jimmy Eat World ... 'The Middle'
 
Newer update Please say a prayer

Newer update Please say a prayer

Please Pray...
Posted 18 hours ago
This is Gina posting for Colleen...

This evening Tommy was moved back into the pediatric ICU so doctors could keep a close watch over him. His belly was 30 inches around and causing him extreme discomfort late in the day. They started him on oxygen, milrinone and IV lasix to provide relief. He is currently sleeping peacefully in the ICU with mom and dad by his side.

His biopsy earlier today allowed the doctors to check the pressures in his heart and it was discovered that he has high diastolic (relaxing) pressures on the right side of his heart. According to Dr. Gajarski, there are a couple potential reasons for this problem and they need to determine the exact cause in order to know what to do next. He has said that there is no "magic medicine" for treating high diastolic pressure in the heart. They are waiting for the 2nd set of results from the biopsy that will tell them if Tommy has cellular rejection. They expect to know sometime tomorrow late afternoon. If the results show that he has cellular rejection, this is not ideal, however, they have a treatment protocol. If the results are negative for rejection, then Dr. Gajarski will need to reevaluate treatment options. The options before them are limited, difficult and uncertain. There is simply no clarity at this point.

Overall, Colleen has described the day as painful and confusing for Tommy, and emotional and difficult for all of them. In addition to Tommy's unstable condition and pain, his transplant sister, Lindsay, has also been moved back into the ICU and is currently on ECMO (life support) to help stabilize her.

When we are forced into periods of waiting, we must use that time to call on the Lord. Mike and Colleen are weary and we must intercede for them. Colleen has asked us to pray for wisdom and clarity and that Tommy's heart and body would respond favorably and be given relief from his symptoms. Also, please pray for rest and comfort for the Schomaker's and for Lindsay's family in the periods of waiting. The staff at U of M are a blessing to their patients. Colleen is constantly mentioning how helpful and truly wonderful they have been throughout the last two weeks, not to mention the last 8 1/2 years. Pray for these people as well.

"When I cannot understand my Father's leading,
And it seems to be but hard and cruel fate,
Still I hear that gentle whisper ever pleading,
God is working, God is faithful, ONLY WAIT."

With all my prayers, love and heart,

Gina Kell Spehn

Trust in the Lord and lean not on your own understanding.
In all your ways acknowledge him and he will make your paths straight.
 
Thanks Lyn for posting. I hope and pray he is doing better since this was originally written.
 
Prayers still needed! New update.

Prayers still needed! New update.

Please step up those prayers. Tonight's post from Colleen:

Thanks for posting last night, Gina. So much happened so fast that we could not process everything from the long and disappointing day. I still don't think we can.

I apologize for this post being this way, but I am feeling so very discouraged and depleted this evening (probably not the best time to post, but wanted to get everyone who has been praying so hard, an update).

We found out this afternoon that Tommy has Cellular Rejection. The level of rejection did not come back high, but Dr. Gajarski said that sometimes the levels can be confusing and due to Tommy's current clinical status (very high pressures in both the right and left sides of his heart, extreme swelling of his abdomen, 30 inches around last night and that he is this soon out of transplant), he needs to treat this as a rejection episode. So, we just finished our first round of 3 large steroid doses. We are trying to prepare ourselves for the adverse reactions and pray that these doses work to bring his pressures down, his belly down, the rejection under control, so we can begin moving forward in this recovery. His spirits were better today but he so very much wants to get out of here.

And of course, our hearts are so very heavy about Lindsay. She needs a lot of prayers as she is still on ECMO and has been having siezures.

I do not understand how or why all these things happened yesterday, and I know we don't 'get' to understand. So, we will go forward, one long hour at a time, trusting and praying for His mercy and strength in the day that is upon us. Thank you so much for faithfully standing right alongside of us and lifting us up in fervent prayer.

Love, Colleen

P.S. Matthew and now Genna are both sick with fevers, etc. I miss them and feel badly that I cannot be there for them, especially when they are sick. I know they are in the best of hands and I thank my mom and Mike's mom for helping them through this.
 
My prayers and requests for intervention are being sent heaven-ward. I have requested that St. Jude intervene on behalf of both Tommy and Lindsay and their families to bring hope and recovery.
 
This latest post brings tears to my eyes. My prayers continue for a good outcome.
 
Oh my...I'm so sorry to hear that Tommy and Lindsay aren't doing so well. Lots of prayers and positive thoughts going the families' way.

Thank you for keeping us updated.

Melissa
 
Finally, some good news to report!

Finally, some good news to report!

THanks so much for the prayers. Finally, Tommy is headed in the right direction. many hugs. Janet From Tommy's page:

A New Week...A New Monday..
Posted 12 hours ago
...and so far it's off to a much better start..Praise & Glory to God!
As I reflect on last week at this time I was in such a dark place again, as I watched our dear heart sister, Lindsay get raced back to the ICU and put on life support as the many amazing medical professionals here worked diligently to re-start her new heart. Later that day, Tommy's condition went from bad to worse as he had trouble breathing and fluid accumulated and he was taken to the ICU at 9pm. For me, it was a week of what if's, pleaful prayers and some doubt,..all the while trying to keep the faith, trust and be patient in the long waiting. I am not sure exactly what God is telling or teaching us,..but I have learned a lot this week, albeit difficult.

I think Tommy must have a strong attachment to Lindsay and didn't want her to be alone in her longer than hoped for road to recovery! Today is a 'new Monday' and Lindsay and Tommy are making their very attentive cardiologist work overtime! I was so thankful to hear him say this morning that 'things are looking good', and I am even more in awe and shock to learn that our little Lindsay Dean is EXTUBATED,..a huge miracle!! (to think that a week ago today she was on full life support and fighting so hard for life). Both of them still have a road ahead to travel, but they are being held and uplifted by so many in prayer,..we are thankful. Our other 'transplant sister', Sofi, still needs prayers as they attempted to extubate her over the weekend and decided she was not yet ready. We pray for her and her parents as they must continue to wait on this and have been for so long.

Tommy is finally mobilizing his fluid,..and he has quite a bit of it to move! Today his belly is down in size and thus his weight, so we are very thankful for this. Tommy was up several times between 12am and 3am to pee so they are tweeking his diuretic therapy as this is a 'fine line' to tote. The plan is to have him keep moving the fluid out and to repeat an echo of his heart on Wednesday and then another biopsy next week to check the rejection and the high pressures in his heart. We are hopeful that both are going down.

Matthew stayed here last night so Tommy is enjoying having him here again today. Tommy just went to physical therapy and did well.

Blessings,
...Colleen
 
My heart is so full right. I shall continue to pray and ask intervention by St. Jude for Tommy, Lindsay and Sofi as well as their families. I pray that Faith will sustain them all on this long and difficult road.
 
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