Tomasek´s story

Tomasek´s mom went trough C-section in previous pregnancy so with Tomasek doctor planned also C-section for moms safety for 28.12.2016.

The whole pregnancy went without any complications all tests were good. Tomasek was born earlier Sunday 4.12.2016 around 16:30 my water broke and 21:01 was Tomasek born (36week). His first moment out was without any cry I couldn’t even see him. After a while I heard a cry. Everyone was saying that everything is ok that on Tomasek has a little problem with breathing. After a while nurse came to my room and told me that the will transport Tomasek to hospital in Hradec Kralove. At 11 am my husband saw Tomasek for the first time right before the transport.

                      

We had no information about Tomasek until next day. My husband went there to find out what was happening. The doctor thought he might be pre-medicated with calm down pills after intubation and they should just wait until it is gone.

I saw my son for the first time 8.12.2016. Tomasek was not getting better and doctor start to finding out why is he not breathing. After that the made test for CCHS which ended up positive.

                       

Tomasek´s large intestine (colon) was operated in Motol hospital in Prague 22.12.2016. After that he was moved to Hradec Kralove.

2.1.2017 Tomasek went through tracheostomy after 2 hours was Tomasek awake and started to look around.

Until this day Tomasek didn’t breath at all, 2 days after surgery (4.1.2017) he started to breath a bit.

This day we found out about another health issue and that is functions of his heart. His heart works only 13%. Which is very normal with kids who has CCHS.

                       

10.1.2017: This day is very important for us, for the first time we could hold Tomasek and also I breastfeed him for the first time.

                       

17.1.2017: A big step, drank the whole portion of milk.

23.1.2017: Doctors noticed bad sugar level in his body – Hypoglycemia.

24.1.2017: Tomasek got sensor called Dexcom (for better sencoring his blood sugar). After that he start using Proglycem, which caused side affects as being swollen.

21.2.2017: Blood in sugar was stabilized. Doctor were trying to find what cause heart problems.

22.2.2017: New medicine added

25.2.2017: A big day for us – Tomasek´s big sister finally saw him.

                      

2.3.2017: Stopped using Proglycem.

7.3.2017: Hypoglycemia came back.

30.3.2017: Tomasek is doing great, he gets supply milk 75ml, he has 4 kg and we cannot wait for every little steps forward he does.

      

31.5.2017: We are very busy at the moment. Tomasek is a good eater, he also loves juice but he is not a big fan of tea. He is currently in Motole hospital in Prague, for his check up with stoma and make appointment for a operation in October 2017.

1.6.2017: Tomasek got Holter monitor for 16 hours, during that time his heart stopped working for 1 second. This one pause is not a reason to do a cardiostimulator. He needs to go for checks-up every 3 months.

2.6.2017: Tomasek is transfered back to hospital in Hradec Kralove. He is without medicaments, only needs extra salt.

9.6.2017: Tomasek ate first banana and biscuit. This day doctors allowed disconecting Tomasek for 15 minutes. For now this is happening 3-4x per day always for 10 minutes.

                                   

We will never give up, we will fight as much as we can!